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Reporting of attitudes: A systematic review and quantitative analysis of research publications in palliative care journals
... Future analyses of cancer journals could be on 'quality of life' [208] and 'pediatric population' [209] as was done earlier. Furthermore, an evidence-focused reporting analysis such as on systematic reviews/meta-analyses [210] and randomized controlled trials [211] might provide scientific hierarchical evidence base. A shift in focus occurred from symptom control to quality of life [211] along a knowledge generation to translation continuum in healthcare provision for cancer pain and palliative oncology. ...
... Furthermore, an evidence-focused reporting analysis such as on systematic reviews/meta-analyses [210] and randomized controlled trials [211] might provide scientific hierarchical evidence base. A shift in focus occurred from symptom control to quality of life [211] along a knowledge generation to translation continuum in healthcare provision for cancer pain and palliative oncology. [212] Lesser number of systematic reviews and randomized controlled trials threatens Evidence Based Cancer Care, which was similar to palliative care journals [210,211] while greater prevalence of original articles especially on treatment proved to be encouraging evidence-oriented paradigm. ...
... A shift in focus occurred from symptom control to quality of life [211] along a knowledge generation to translation continuum in healthcare provision for cancer pain and palliative oncology. [212] Lesser number of systematic reviews and randomized controlled trials threatens Evidence Based Cancer Care, which was similar to palliative care journals [210,211] while greater prevalence of original articles especially on treatment proved to be encouraging evidence-oriented paradigm. [213] Future analyses should specifically focus on clinical trials [214] and their content [215] or quality of reporting according to recommended guidelines. ...
... [41] Thus, an analysis of research evidence could not be based upon anecdotal findings, and so, there is a need to evaluate the reporting of research on DBC in palliative care journals. Previously published studies on analysis of palliative care journals reported on moral problems (ethical issues), [42] euthanasia, [43] chaplains and community-based clergy, [44,45] religion and spirituality, [45][46][47] cancer pain, [48] pediatric palliative care, [49] QoL, [50] and cancer-related fatigue. [51] The objective of this paper was to perform a quantitative analysis of research articles on DBC, published in palliative care journals over the past 2 years. ...
... Flanelly et al. [44] reviewed three palliative care journals from 1990 to 1999 and found an RR of 5.6% (47/838) for articles on the role of chaplains and clergy. Kumar found a 2-year RR of 5.6% for cancer pain articles [48] in 19 palliative care journals, 5-year RR of 2.66% for pediatric palliative care [49] articles in 12 palliative care journals, 5-year RR of 1.96% for articles on QoL [50] in 12 palliative care journals, and a 5-year RR of cancer-related fatigue [51] in 12 palliative care journals to be 1.04%. The reason why this study found a comparatively better RR in lesser number of years of publication (compared to the RRs of pediatric palliative care, QoL, and cancer-related fatigue) could only be due to the greater emphasis given toward DBC in the palliative care journals in recent years. ...
Context: The most common concern among terminally ill patients in palliative care is death, which is often perceived as a psychosocial stigma. The knowledge, attitudes, beliefs, and experiences regarding death influence both the delivery of palliative care and its outcomes. Aims: This study was conducted with an aim to perform a quantitative analysis of research publications in palliative care journals for articles on death and bereavement care (DBC). Settings and Design: Systematic review of palliative care journals. Materials and Methods: Twelve palliative care journals were searched for articles related to "death" in the title of the articles published in 2009 and 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles category was further classified according to study designs. Statistical Analysis: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows version 11.5. Results: The overall reporting rate among all journals was 5.27% (96/1821), and Palliat Support Care had the highest reporting rate of 14.4% (17/118), followed by BMC Palliat Care with 9.3% (4/43) and Palliat Med with 7.4% (16/216). Conclusions: The overall reporting rate for DBC articles in palliative care journals was very low, and very few randomized clinical trials and systematic reviews were found. The study findings indicate a lack of adequate evidence base for DBC.
... 10,[85][86][87] Selection in relation to study aims and outcomes was a difficult task due to the probability of overlapping topics as knowledge, beliefs, needs and experiences. 88 Even though the transparent selection process balances this limitation, some relevant studies might still have been excluded. Publication bias assessment was not possible due to the majority of included studies being of qualitative design, for which there is no established guidance and its potential effects are not fully understood. ...
Background:
Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region.
Aim:
To synthesize and appraise the evidence about patients with advanced illness and their caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America.
Design:
Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool.
Data sources:
MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included.
Results:
Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver's role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients' preference to be informed about their condition contrasting with caregivers' reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general.
Conclusion:
Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America.
... The use of such non-validated search methodology though poses a threat for external validity of this study's findings, was previously used and reported by many authors. [77][78][79][80]The study findings provided 1-year reporting status and not reporting trend per se, which would be evident on longitudinal analyses of related journals. Thus caution is warranted prior to interpretation and application of the study's findings. ...
... [8] One of the main causes for lack of quality in provided care for terminally ill patients in an era of evidence-informed/evidence-based practice is the lack of adequate research evidence [9] and this may be due to four possible reasons: Lesser studies being conducted on such population, publication of lesser number of studies, sociocultural and ethical issues and reporting characteristics of such studies. [10,11] Previously published studies on analysis of palliative care journals were on reporting of moral problems (ethical issues), [12] euthanasia, [13] chaplains and community-based clergy [14,15] and religion and spirituality, [15][16][17] cancer pain, [18] pediatric palliative care [19] and quality of life. [20] Previous reviews of validation studies related to palliative care were on Edmonton symptom assessment system, [21] Memorial-Sloan Kettering Cancer Center nomogram, [22] response evaluation criteria in solid tumours (RECIST), [23] General self-efficacy scale, [24] prediction models for mammographic screening in breast cancer, [25,26] measures of perceived social support, [27] cause of death, [28] signal detection theory pain measures [29] which were published in other specialty journals. ...
... The overall reporting rate for HIV/AIDS articles in palliative care journals is very low and there were no randomized clinical trials and systematic reviews found. In this context, a reporting of HIV/AIDS-A Systematic Review and Quantitative Analysis of Research Publications in Palliative Care Journals indicate a lack of adequate evidence base for HIV/AIDS in palliative care literature, and there is no information about molecular diagnosis application related to palliatives care [27]. The variability of the resilience of the immune system and the potentially fatal nature of some of the infections, make it difficult to estimate the prognosis of an individual. ...
... Previously published studies on analysis of palliative care journals were on reporting of moral problems (ethical issues), [30] euthanasia, [31] chaplains and community-based clergy, [32,33] religion and spirituality, [33][34][35] cancer pain, [36] and pediatric palliative care. [37] The objective of this paper was to perform a quantitative analysis of research articles on QoL, published in palliative care journals over the past 5 years. ...
Palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. One of the most important goals in clinical palliative care is to improve patients' quality of life (QoL).
This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on QoL.
This was a systematic review of palliative care journals.
Twelve palliative care journals were searched for articles with "QoL" in the title of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into assessment and treatment, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original article category was further classified according to study designs.
Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5.
The overall reporting rate among all journals was 1.95% (71/3634), and Indian Journal of Palliative Care (IJPC) had the highest reporting rate of 5.08% (3/59), followed by Palliative Medicine (PM) with 3.71% (20/538), and Palliative and Supportive Care (PSC) with 3.64% (9/247) reporting.
The overall reporting rate for QoL articles in palliative care journals was 1.95% and there were very few randomized clinical trials and systematic reviews found. The study findings indicate further high-quality research to establish an adequate evidence base for QoL.
Palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. One of the most important goals in clinical palliative care is to improve patients' quality of life (QoL).
This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on QoL.
This was a systematic review of palliative care journals.
Twelve palliative care journals were searched for articles with "QoL" in the title of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into assessment and treatment, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original article category was further classified according to study designs.
Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5.
The overall reporting rate among all journals was 1.95% (71/3634), and Indian Journal of Palliative Care (IJPC) had the highest reporting rate of 5.08% (3/59), followed by Palliative Medicine (PM) with 3.71% (20/538), and Palliative and Supportive Care (PSC) with 3.64% (9/247) reporting.
The overall reporting rate for QoL articles in palliative care journals was 1.95% and there were very few randomized clinical trials and systematic reviews found. The study findings indicate further high-quality research to establish an adequate evidence base for QoL.
Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence.
This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care.
This was a systematic review of palliative care journals.
Twelve palliative care journals were searched for articles with "paediatric" or "children" in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles' category was further classified according to study designs.
Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5.
The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206).
The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.
To care for terminally ill and dying patients requires a thorough medical education, encompassing skills, knowledge, and attitudes in the field of palliative care. Undergraduate medical students in Germany will receive mandatory teaching in palliative care in the near future driven by recent changes in the Medical Licensure Act. Before new curricula can be implemented, the knowledge of medical students with respect to palliative care, their confidence to handle palliative care situations correctly, their therapeutic attitude, and their subjective assessment about previous teaching practices have to be better understood.
We designed a composite, three-step questionnaire (self estimation of confidence, knowledge questions, and opinion on the actual and future medical curriculum) conducted online of final - year medical students at two universities in Germany.
From a total of 318 enrolled students, 101 responded and described limited confidence in dealing with specific palliative care issues, except for pain therapy. With regard to questions examining their knowledge base in palliative care, only one third of the students (33%) answered more than half of the questions correctly. Only a small percentage of students stated they had gained sufficient knowledge and experience in palliative care during their studies, and the vast majority supported the introduction of palliative care as a mandatory part of the undergraduate curriculum.
This study identifies medical students' limited confidence and knowledge base in palliative care in 2 German universities, and underlines the importance of providing a mandatory palliative care curriculum.
We explored how often journal articles reporting HIV research sponsored by a developed country, but conducted in a developing country, mention research ethics committee (REC) approval from both countries, and what factors are involved. Of all such 2007 articles on Medline conducted in one of four developing countries (N = 154), only 52% mentioned such dual approval. Mention of dual vs. single approval was more likely among articles with ≥ 50% sponsor country authors, and the United States as the sponsor country. Also, dual approval was more likely among articles that mentioned informed consent and funding, had ≥ 50% sponsor country authors, were biomedical (vs. psychosocial), and appeared in journals adopting International Committee Medical Journal Editors (ICMJE) guidelines. Dual approval was thus obtained in only half of the articles and was associated with ethical and logistic issues, indicating the need for clearer and more universally accepted guidelines.
A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature.
Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract.
During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain.
While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model.
Physiotherapists play an inherent role in the multidisciplinary palliative care team. Existing knowledge, attitudes, beliefs and experiences influence their team participation in palliative care.
The objective of this study was to assess the changes in knowledge, attitudes, beliefs and experiences among student physiotherapists who attended a palliative care training program.
Preliminary quasi-experimental study design, conducted at an academic institution.
Fifty-two student physiotherapists of either gender (12 male, 40 female) of age (20.51±1.78 years) who attended a palliative care training program which comprised lectures and case examples of six-hours duration participated in this study. The study was performed after getting institutional approval and obtaining participants' written informed consent. The lecture content comprised WHO definition of palliative care, spiritual aspects of life, death and healing, principles, levels and models of palliative care, and role of physiotherapists in a palliative care team. The physical therapy in palliative care-knowledge, attitudes, beliefs and experiences scale (PTiPC-KABE Scale)- modified from palliative care attitudes scale were used for assessing the participants before and after the program.
Paired t-test and Wilcoxon signed rank test at 95% confidence interval using SPSS 11.5 for Windows.
Statistically significant differences (P<0.05) were noted for all four subscales- knowledge (7.84±4.61 points), attitudes (9.46±8.06 points), beliefs (4.88±3.29 points) and experiences (15.8±11.28 points) out of a total score of 104 points.
The focus-group training program produced a significant positive change about palliative care in knowledge, attitudes, beliefs and experiences among student physiotherapists.
Patient accrual into cancer clinical trials remains at low levels. This survey elicited attitudes and practices of cancer clinicians towards clinical trials.
The 43-item Clinicians Attitudes to Clinical Trials Questionnaire was completed by participants in an intervention study aimed at improving multi-disciplinary involvement in randomised trials. Responses from 13 items were summed to form a research-orientation score.
Eighty-seven clinicians (78%) returned questionnaires. Physicians, more often than surgeons, chose to prioritise prolonging a patient's life, recruited ≥50% of patients into trials and attended more research-focussed conferences. Clinicians at specialist centres were more positive about trials with no-treatment arms than those at district general hospitals, more likely to believe clinician, rather than patient reluctance to participate was the greater obstacle to trial accrual, and preferred national and international to local recognition. Clinicians belonging to breast and colorectal teams were less disappointed about not enrolling patients in trials and more accepting of no-treatment arm trials. Research orientation was higher in physicians than surgeons and higher in specialist centres than district hospitals.
This study provides greater understanding of clinicians' attitudes to trials. Results have been used to inform training interventions for clinicians targeting the problem of low and selective accrual.
Evaluative bibliometrics uses advanced techniques to assess the impact of scholarly work in the context of other scientific work and usually compares the relative scientific contributions of research groups or institutions. Using publications from the National Institute of Allergy and Infectious Diseases (NIAID) HIV/AIDS extramural clinical trials networks, we assessed the presence, performance, and impact of papers published in 2006-2008. Through this approach, we sought to expand traditional bibliometric analyses beyond citation counts to include normative comparisons across journals and fields, visualization of co-authorship across the networks, and assess the inclusion of publications in reviews and syntheses. Specifically, we examined the research output of the networks in terms of the a) presence of papers in the scientific journal hierarchy ranked on the basis of journal influence measures, b) performance of publications on traditional bibliometric measures, and c) impact of publications in comparisons with similar publications worldwide, adjusted for journals and fields. We also examined collaboration and interdisciplinarity across the initiative, through network analysis and modeling of co-authorship patterns. Finally, we explored the uptake of network produced publications in research reviews and syntheses. Overall, the results suggest the networks are producing highly recognized work, engaging in extensive interdisciplinary collaborations, and having an impact across several areas of HIV-related science. The strengths and limitations of the approach for evaluation and monitoring research initiatives are discussed.
Registered nurses (RNs) and care workers (CWs) have important roles in providing end-of-life care to older adults, but little is known about the attitudes of RNs and CWs in Japan. In this study, 464 RNs and CWs working in facilities in Japan were asked to complete a self-administered questionnaire that included the Frommelt Attitude Toward Care of the Dying Scale, Form B, Japanese version (FATCOD-Form B-J) and the Death Attitude Profile (DAP), Japanese version. A total of 388 (83.6%) questionnaires were returned, and 367 (79.1%) were fully completed. The final sample included 190 RNs and 177 CWs. Multiple regression analysis showed that better attitudes toward caring for the dying were positively associated with seminar attendance and negatively associated with fear of death.
Planning for end-of-life (EOL) care can result in better patient outcomes and lowered health care costs. We hypothesized that knowledge and experiences with EOL care would influence patients' EOL planning (i.e., health care decisions, hospice use). Using an observational, cross-sectional design, we recruited a community sample of 331 South Floridians aged 18 to 84 (M = 44 years, SD = 14.95) to complete a questionnaire examining knowledge and opinions on EOL issues. Regression analyses showed that prior knowledge of living wills and hospice services were associated with more favorable attitudes toward hospice care, preference for limited medical interventions at EOL, and more comfort in communicating about death and dying. Patient education on EOL care may increase hospice use, enhance EOL planning, and improve patient outcomes.
Disclosures of funding sources and conflicts of interests (COI) in published peer-reviewed journal articles have recently begun to receive some attention, but many critical questions remain, for example, how often such reporting occurs concerning research conducted in the developing world and what factors may be involved.
Of all articles indexed in Medline reporting on human subject HIV research in 2007 conducted in four countries (India, Thailand, Nigeria and Uganda), this study explored how many disclosed a funding source and COI, and what factors are involved.
Of 221 articles that met the criteria, 67.9% (150) disclosed the presence or absence of a funding source, but only 20% (44) disclosed COI. Studies from Uganda were more likely, and those from Nigeria were less likely to mention a funding source (p<0.001). Of articles in journals that had adopted International Committee of Medical Journal Editors (ICMJE) guidelines, 56% did not disclose COI. Disclosure of funding was more likely when: > or = 50% of the authors and the corresponding author were from the sponsoring country, the sponsor country was the USA, and the articles were published in journals in which more of the editors were from the sponsoring countries.
Of the published studies examined, over a third did not disclose funding source (ie, whether or not there was a funding source) and 80% did not disclose whether COI existed. Most articles in ICMJE-affiliated journals did not disclose COI. These data suggest the need to consider alteration of policies to require that published articles include funding and COI information, to allow readers to assess articles as fully as possible.
To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia.
An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation, religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded.
WE WERE ABLE TO DISTINGUISH FOUR CLUSTERS: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities.
In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia.
Medical students' learning about end-of-life care can be categorized into three learning modalities: formal curriculum, taught in lectures; informal curriculum, conveyed through clinical experiences; and "hidden curriculum," inferred from behaviors and implicit in medical culture. In this study, we evaluated associations between survey items assessing these learning modalities and students' perceptions of their preparation, quality of education, and attitudes toward end-of-life care.
Data were collected from a national survey of fourth-year medical students (n = 1455) at 62 medical schools in 2001. Linear regression analyses were performed to assess associations between formal, informal and hidden end-of-life care curricula and students' perceived preparedness to provide end-of-life care, quality of end-of-life care education and attitudes toward end-of-life, controlling for students' demographics and clustered by school.
Students reporting more exposure to formal and informal curricula felt more prepared and rated their end-of-life care education higher. Students with more exposure to a hidden curriculum that devalued end-of-life care perceived their preparation as poorer and had poorer attitudes toward end-of-life care. Minority students had slightly more negative attitudes but no differences in perceived end-of-life care preparation.
Medical students' sense of preparedness for end-of-life care and perceptions of educational quality are greater with more coursework and bedside teaching. By contrast, the hidden curriculum conveying negative messages may impair learning. Our findings suggest that implicit messages as well as intentional teaching have a significant impact on students' professional development. This has implications for designing interventions to train physicians to provide outstanding end-of-life care.
Self-awareness of one's own reactions towards patients and their relatives is of paramount importance for all professionals in palliative care. 'Core attitude' describes the way in which a person perceives himself and the world, and forms the basis for his actions and thoughts. Objective: The aim of this study is to explore what core attitude means for palliative care professionals and whether there is a specific core attitude in palliative care.
Qualitative study with 10 face-to-face in-depth interviews with experts in palliative care (nurses, physicians, social workers, psychologists, chaplain) in Germany.
Core attitude in palliative care can be best described with the following three domains: 1) personal characteristics; 2) experience of care; and 3) competence in care. Authenticity is the most important characteristic of professionals, along with honesty and mindfulness. Core attitude primarily becomes apparent in the relationship with the patient. Perception and listening are key competences. The experts emphasized the universality of the core attitude in the care of ill people. They stressed the importance and relevance of teaching core attitudes in palliative care education.
In the field of palliative care, core attitude consists predominately of authenticity, manifests itself in relationships, and requires a high degree of perceptiveness.
There is growing interest in the interface between palliative care and other medical specialties, yet little is known about decision-making processes characterizing such collaborations. At the University of Alabama at Birmingham (UAB), the trauma-burn surgery and neurosurgery services frequently request consults from the palliative care team for patients with a sudden advanced illness from catastrophic injuries or physiologic insult.
We explored surgeons' attitudes and decision-making practices regarding utilization of palliative and supportive care for patients with a sudden advanced illness from traumatic injury or physiologic insult at UAB Hospital, an American College of Surgeons certified level 1 trauma center.
We conducted face-to-face, open-ended interviews with nine attending trauma-burn surgeons and neurosurgeons at UAB, utilizing a grounded theory approach to discover salient themes in surgeons' accounts of the palliative care consultative process. Surgeons' descriptions of exemplary cases provided the context for elucidating the larger dynamic involved in assessing patients' situations and identifying the need for palliative and supportive care services.
We organized the data using decision-making diagrams, identifying multiple pathways within the larger consultative framework. Although case-based responses exhibited variations in surgeons diagnostic or prognostic criteria, patient's location in the illness/injury trajectory, and surgeon's goals/desired outcomes; a general decision-making pathway emerged.
Through collaboration with the palliative care service at UAB, trauma-burn surgeons and neurosurgeons are better equipped to manage the multidimensional nature of suffering and provide a holistic approach to care for patients and families dealing with a sudden advanced illness.
Scant attention has been paid to the decision-making process of caregivers in disclosing bad news to patients. The purpose of this study was to describe factors influencing this process and to ascertain whether physicians and nurses behave differently, based on Ajzen and Fishbein's (1980) theory of reasoned action (TRA). In this correlational quantitative research study, a validated anonymous questionnaire was administered to a convenience sample comprising 100 physicians and 200 nurses employed in several Israeli hospitals. The results indicate that only around 30% of physicians always disclosed bad news in the past, and that future decisions would be made on an individual basis. In contrast, more than 76% of nurses said that they would disclose bad news to their patients in the future. Caregivers find it difficult to disclose terminal status information to all types of patients, although most find it relatively easier in the elderly. TRA may help to predict disclosure of bad news by physicians and nurses. Behavioural beliefs, subjective attitudes and prior clinical experience with disclosure of bad news were the main factors influencing caregivers' disclosure. The main predictors among nurses were behavioural beliefs and prior experience, and among physicians were subjective norms and prior experience.
This study reports UK doctors' opinions about legalisation of medically assisted dying (euthanasia and physician-assisted suicide), comparing this with the UK general public. A postal survey of 3733 UK medical practitioners was done. The majority of UK doctors are opposed to legalisation, contrasting with the UK general public. Palliative medicine specialists are particularly opposed. A strong religious belief is independently associated with opposition to assisted dying. Frequency of treating patients who die is not independently associated with attitudes. Many doctors supporting legalisation also express reservations and advocate safeguards; many doctors opposing legalisation believe and accept that treatment and nontreatment decisions may shorten life. It is hoped that future debates about legalisation can proceed with this evidence in mind.
There is evidence from outside the United Kingdom to show that physicians' religious beliefs influence their decision making at the end of life. This UK study explores the belief system of consultants, nurse key workers and specialist registrars and their attitudes to decisions which commonly must be taken when caring for individuals who are dying. All consultants (N = 119), nurse key workers (N = 36) and specialist registrars (N = 44) working in an acute hospital in the north-east of England were asked to complete a postal questionnaire. In all, 65% of consultants, 67% of nurse key workers and 41% of specialist registrars responded. Results showed that consultants' religion and belief systems differed from those of nurses and the population they served. Consultants and nurses had statistically significant differences in their attitudes to common end of life decisions with consultants more likely to continue hydration and not withdraw treatment. Nurses were more sympathetic to the idea of physician-assisted suicide for unbearable suffering. This study shows the variability in belief system and attitudes to end of life decision making both within and between clinical groups. This may have practical implications for the clinical care given and the place of care. The personal belief system of consultants was not shown to affect their overall attitudes to withdrawing life-sustaining treatment or physician-assisted suicide.
To review studies over a 20-year period that assess the attitudes of UK doctors concerning active, voluntary euthanasia (AVE) and physician-assisted suicide (PAS), assess efforts to minimise bias in included studies, determine the effect of subgroup variables (e.g. age, gender) on doctors' attitudes, and make recommendations for future research. Data sources: Three electronic databases, four pertinent journals, reference lists of included studies. Review methods: Literature search of English articles between January 1990 and April 2010. Studies were excluded if they did not present independent data (e.g. commentaries) or if they related to doctors outside the UK, patients younger than 18 years old, terminal sedation, withdrawing or withholding treatment, or double-effect. Quantitative and qualitative data were extracted.
Following study selection and data extraction, 15 studies were included. UK doctors oppose the introduction of both AVE and PAS in the majority of studies. Degree of religiosity appeared as a statistically significant factor in influencing doctors' attitudes. The top three themes in the qualitative analysis were the provision of palliative care, adequate safeguards in the event of AVE or PAS being introduced, and a profession to facilitate AVE or PAS that does not include doctors.
UK doctors appear to oppose the introduction of AVE and PAS, even when one considers the methodological limitations of included studies. Attempts to minimise bias in included studies varied. Further studies are necessary to establish if subgroup variables other than degree of religiosity influence attitudes, and to thoroughly explore the qualitative themes that appeared.
Background:
Corneal donation is a sight restoring procedure. Internationally demand exceeds supply. It is a tissue that palliative care patients may be able to donate, yet donation rates from this group are low.
Aim:
To explore the attitudes, knowledge, practice, and experience of corneal donation from hospice staff with direct clinical contact with patients.
Design:
Anonymous paper questionnaire with fixed response and free text components.
Setting/participants:
Questionnaires were delivered to 704 clinical multi-disciplinary team members in 12 hospices within the Yorkshire Palliative Medicine Regional Learning Group, UK.
Results:
434 completed questionnaires were received. Most respondents believed that corneal donation is a rewarding opportunity of which patients and families should be aware, but over 90% of respondents rarely or never raised the topic, and only 33% felt that it was part of their role. Key reasons for not engaging in discussions were: concerns about the impact of the discussion on patients and families, a belief held by hospice staff that they lacked essential knowledge, negative experiences of corneal donation, concern about enucleation, a perception that donation is not part of hospice culture, low levels of training and the personal significance of eyes.
Conclusions:
Despite positive staff attitudes towards corneal donation, many barriers to discussing donation were identified, which may reduce donation rates. This could be improved by local policies encompassing further education, prompts in documentation and availability of leaflets.
Artificial hydration in end-of-life care is an important and emotive topic that frequently raises concerns from patients, relatives and healthcare professionals (HCPs). The aim of this review was to give an overview of currently available evidence around opinions and attitudes towards artificial hydration at the end of life.
In total 11 studies reported on opinions towards providing artificial hydration, nine studies reported on attitudes towards the effect of artificial hydration on quality-of-life and four studies towards its effect on survival. Reported percentages of respondents in favour of providing artificial hydration at the end of life varied from 22 to 100% and for nonprovision from 0 to 75%. One-third of the general public has been found to think that artificial hydration improves comfort, while among patients a majority feels it can have a physical or psychological benefit. HCPs were found to be less optimistic: 1-43% thought patients benefit from artificial hydration at the end of life. HCPs mostly agree artificial hydration does not prolong survival, although up to 89% of patients expect it does.
Opinions and attitudes towards the use of artificial hydration at the end of life vary. Communication of this imperative topic in end-of-life care is important for better care and should be research-based.
With the growth and development of palliative care, interest in pastoral care, spirituality, and religion also seems to be growing. The aim of this article is to review the topic of pastoral care, spirituality, and religion appearing in the journals of palliative care, between January 1984 and January 2002.
We wanted to assess Indian palliative-care nurses and physicians' attitudes toward pain control and palliative sedation.
From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss).
The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death.
Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.
Objectives: To review studies over a 20-year period that assess the attitudes of UK doctors concerning active, voluntary euthanasia (AVE) and physician-assisted suicide (PAS), assess efforts to minimise bias in included studies, determine the effect of subgroup variables (e.g. age, gender) on doctors’ attitudes, and make recommendations for future research.
Data sources: Three electronic databases, four pertinent journals, reference lists of included studies.
Review methods: Literature search of English articles between January 1990 and April 2010. Studies were excluded if they did not present independent data (e.g. commentaries) or if they related to doctors outside the UK, patients younger than 18 years old, terminal sedation, withdrawing or withholding treatment, or double-effect. Quantitative and qualitative data were extracted.
Results: Following study selection and data extraction, 15 studies were included. UK doctors oppose the introduction of both AVE and PAS in the majority of studies. Degree of religiosity appeared as a statistically significant factor in influencing doctors’ attitudes. The top three themes in the qualitative analysis were the provision of palliative care, adequate safeguards in the event of AVE or PAS being introduced, and a profession to facilitate AVE or PAS that does not include doctors.
Conclusions: UK doctors appear to oppose the introduction of AVE and PAS, even when one considers the methodological limitations of included studies. Attempts to minimise bias in included studies varied. Further studies are necessary to establish if subgroup variables other than degree of religiosity influence attitudes, and to thoroughly explore the qualitative themes that appeared.
End-of-life (EOL) decision making is an integral component of high-quality health care. Factors influencing individual primary care physicians (PCPs) can affect their perspectives and referral preferences for EOL care. Numerous barriers have been cited, including patient and family readiness, physicians' comfort with discussing death, and the pursuit of a cure. This study explores another barrier by examining physician ethnicity and comparing the attitudes toward hospice referral between African American and white American primary care providers (PCPs). Training PCPs to efficiently transition from a curative model of care to a palliative model of care has the potential to increase the level of appropriate EOL care, increase hospice referral, and enhance patient and provider satisfaction; it is also fiscally prudent. This preliminary study aims to compare attitudes toward hospice referral and physicians' personal experiences with hospice between African American and white American PCPs.
The survey tool was developed by PCPs at the Mayo Clinic Florida after a full literature review and consultation with hospice physicians, oncology specialists, and primary care colleagues from the residency programs at Mayo Minnesota and Mayo Arizona, with input from the Mayo Survey Office, and distributed to all physicians and residents in the departments of Family Medicine at via Mayo's intranet; Mayo's Midwest Regional Practices (245 physicians) received the survey via standard mail. The survey consisted of 17 questions regarding attitudes toward hospice referral and the one question regarding physicians' personal experience with hospice. The final sample size consisted of 167 white American physicians and 46 African American physicians. Responses were compared using a Wilcoxon rank sum test. P values ≤ 0.05 were considered statistically significant. All statistical analyses were performed using the SAS software package (SAS Institute, Cary, North Carolina).
The distributions of physician age, specialty, board certification, and years practicing medicine were similar between African American and white American physicians, while male gender was more common in white American physicians than African American physicians. Statistically significant differences in attitudes toward hospice between African American and white American physicians were observed for five of the 17 survey questions. There was a dramatic difference in the distribution of patient race between African American and white American physicians, raising the possibility that any differences between white American and African American physicians could be attributed to patient race, rather than physician race. Due to survey limits, larger studies involving more African American physicians are needed to address this topic.
The results of our preliminary study suggest that certain attitudes toward hospice referral may differ between African American and white American PCPs. If validated, further insight into this issue could lead to educational programs for PCPs that correct misperceptions.
To compare the attitudes of Iranian and Swedish nursing students toward caring for dying persons.
Their attitudes were measured with the Frommelt's Attitude Toward Caring of the Dying and the Death Attitude Profile Revised.
The results indicated that the participating Iranian students were more afraid of death and less likely to give care to dying persons than the Swedish participants.
It is suggested that theoretical education should be individualized and culturally sensitive in order to positively influence the students' attitudes, and promote professional development.
There is extensive research documenting serious deficiencies in undergraduate nursing education related to end-of-life care. Many nurses and nursing students have difficulties in dealing with death and report feeling anxious and unprepared to be with patients who are dying. In Argentina, education on palliative care, death, and dying has not been made part of the undergraduate nursing curriculum.
We performed a multicenter survey on undergraduate nursing education regarding the care of dying patients at eight schools of nursing in Buenos Aires, Argentina. We enrolled 680 students from first to fifth year.
Students acknowledged interacting directly with dying patients. Attitudes toward dying patients were highly positive. Students of the fifth year expressed a less satisfying relationship with their patients than those from the first year; considered it as a less gratifying occupation, and also showed a greater preference for avoiding emotional involvement with those patients.
Many of them described in short and very expressive phrases the emotional impact of their encounters with patients facing a life-threatening illness. Students perceived that this issue received more attention in humanistic rather than clinical subjects. Ninety-eight percent of students spontaneously demanded more training in end-of-life care. The interest and desire of undergraduate students to enhance their knowledge and experience in palliative care, demands more specific teaching contents.
This suggests that in Argentina, improvements in undergraduate nursing training are urgently needed and would be well received by the students. It could be very useful to consider this topic as part of accreditation standards for nursing programs.
Advance care directives (ACD) are not used equally by different ethnic groups in the United States. Theories regarding this difference include lack of access to health care, mistrust of the health care system, absence of surrogate decision makers, and universal lack of knowledge on this topic. Few studies have investigated attitudes toward advance care planning for future end-of-life decision-making in the Latino and Cambodian communities.
Six focus groups were conducted, including a total of 20 Latino and 19 Cambodian patients of two community health centers. Focus groups were audiotaped, transcribed, and qualitatively analyzed to identify major themes regarding attitudes toward advance directives and engaging in discussion about advance care planning.
Most patients did not have a health care proxy nor had discussed this topic with their doctor. Two broad themes were identified: integration of belief systems (including religion, suffering/destiny, and importance of quality of life) as well as process/preferences regarding decision-making (including family roles, provider roles, confusion/uncertainty regarding ACD, and openness to learning about ACD).
In focus groups discussing end-of-life decision making among Latino and Cambodian patients, two main themes emerged: integration of belief systems and process/preferences regarding end-of-life care. In particular, efforts to improve completion of advance care directives in diverse populations should consider patients' emphasis on quality of life and destiny in end-of-life planning as well as the role of family consensus in decision-making.
In a previous intervention, we found that reminders from care managers failed to increase the number of their homebound older adult clients with advance directives. Thus, in the current study, we looked at the perceptions and attitudes of care managers about the need to discuss advance directives with their clients. Ninety-five care managers serving community-based nursing home-eligible older adults completed an 18-question survey, which found that care managers overwhelmingly believe it is important to address advance directives. Only 3.2% reported that discussing advance directives is time consuming. No attitudinal barriers were identified. Given their positive attitudes about advance directives, care managers need educational interventions that will provide the knowledge and skills to interact effectively with clients who are resistant to addressing end-of-life issues.
The objective of this study was to compare attitudes of hospice staff towards weight loss and weight assessment in the hospice setting with those of patients with advanced malignancy in the hospital outpatient setting. Two paper-based questionnaires (one for staff and one for patients) were designed. The staff survey was circulated to all hospices in the UK and Ireland, and the patient questionnaire was given to patients attending three oncological care clinics in Belfast, Northern Ireland; Wolverhampton, England; and Auckland, New Zealand. The staff survey was posted to the medical director of each of the 215 hospices in the UK and Ireland. A total of 129 oncology outpatients with a confirmed diagnosis of malignancy and no longer receiving curative oncological interventions took part in the questionnaire. The main outcome measure was descriptive information about hospice weighing practices and attitudes of hospice staff towards weighing patients, and descriptive information was collected about patient attitudes to weighing and weight loss. We found that weighing practices vary across hospices in UK and Ireland. Patients attending the majority of hospices, 96/146 (66%), are rarely weighed. A little over half of hospice staff, 81/146 (56%) considered that weighing could cause patients to be upset. However, 124/129 (96%) of patients with advanced cancer reported that they had never found the experience of being weighed in a healthcare facility upsetting. Some 95/129 (74%) of patients weighed themselves at home and 89% would want to know if their weight was changing. While there is reluctance on the part of many hospice staff to weigh patients, most patients with advanced malignancy in the hospital setting do not report weight measurement to be upsetting.
Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fifty-nine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived 'differences' and 'difficulties' in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration.
This study aimed to examine the reliability and validity of the Euthanasia Attitude Scale (EAS) in Hong Kong medical doctors. A total of 107 medical doctors (61.7% men) participated in a survey at clinical settings in 2008. The 21-item EAS was used to assess their attitudes toward euthanasia. The mean (standard deviation) and median of the EAS were 63.60 (60.31) and 63.00. Total EAS scores correlated well with ''Ethical Considerations,'' ''Practical Considerations,'' and ''Treasuring Life'' (Spearman rho =.37-.96, P < .001) but not ''Naturalistic Beliefs.'' The construct validity of the 3-factor model was appropriate (Kaiser-Meyer-Olkin [KMO] value = 0.90) and showed high internal consistency (Cronbach alpha =.79-.92). Euthanasia Attitude Scale may be a reliable and valid measure for assessing the attitudes toward euthanasia in medical professionals.
To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety.
An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded.
A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies.
Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.
This study aims to explore in depth the needs, current knowledge, and attitudes of all ranks of old age home staff. A large-scale qualitative study with 13 semistructured focus groups was conducted in Hong Kong. Key themes were extracted by framework analysis. Three major themes were extracted, including role as a service provider, current knowledge, and attitude toward palliative care. There was a marked difference in familiarity with the concept of ''palliative care'' between different groups of staff, yet both shared the motivation for enhancement. The biggest concerns for the staff were elderly residents' readiness to accept palliative care, manpower, and resources. Care staff, regardless of rank, seemed to welcome and be ready to adopt a palliative care approach in caring for old age home residents, though not without worries and concerns.
Patients with advanced cancer often have complex care needs requiring collaboration between medical oncology and palliative care providers. Little is known about how effective and acceptable such collaboration is to medical oncologists. Attitudes of Australian medical oncologists toward collaboration with specialist palliative care services were investigated using a Web-based survey. Descriptive statistics and attitude indices were calculated and a thematic content analysis performed. One hundred and fifteen respondents (78 medical oncologists, 37 trainees) completed the survey (response rate 30.3%). Positive attitudes toward specialist palliative care involvement were expressed with most respondents preferring concurrent rather than sequential models of care (94.8%, n = 109). Reported barriers to collaboration included reluctance for referral by patients (minor 60.9%, n = 70; major 8.7%, n = 10) or families (minor 67%, n = 77; major 7%, n = 8), a lack of inpatient beds (minor 27%, n = 31; major 34.8%, n = 40) and inadequate resources for specialist palliative care to take some referrals (minor 30.4%, n = 35; major 30.4%, n = 35). There was no difference in attitude indices for those who had completed a palliative care rotation during their training (33%, n = 38) and those who had not. Suggestions for improvement in collaboration focused around four areas - improved resources, improved multidisciplinary links, mutual respect and understanding, and consistency in service provision. This study is the first to specifically investigate the views of Australian medical oncologists toward collaboration with specialist palliative care. While positive attitudes have been expressed, identified barriers to collaboration need attention.
The purpose of this study is to analyze French general practitioners' attitudes toward prescribing opiate painkillers for dying patients and compare them with their attitudes toward making frequent home visits. One hundred and fifteen general practitioners indicated the acceptability of prescribing opiates in 48 scenarios of terminal cancer patients with different levels of age, gender, stated pain, request for painkillers, and signs of depression; 103 of them also indicated the acceptability of making frequent home visits in the same 48 scenarios. The responses were analyzed using analysis of variance and cluster analysis. For prescribing opiates, four clusters of physicians were found: 13 prescribed primarily in response to stated pain; 43 to request for painkillers; 43 to the combination of pain, request, and depression; and 16 in virtually all cases. Using the same clusters to analyze visiting gave results that were very consistent with those for prescribing. We conclude that French general practitioners have differing and consistent styles in prescribing painkillers and making home visits to dying cancer patients.
Our objective was to determine the knowledge, attitudes, and practices of physicians and nurses on Palliative Care (PC) in Lebanon, across specialties.
We performed a cross-sectional descriptive survey using a self-administered questionnaire; the total number of completed and returned questionnaires was 868, giving a 23% response rate, including 74.31% nurses (645) and 25.69% physicians (223).
Significant differences were found between medical and surgical nurses and physicians concerning their perceptions of patients' and families' outbursts, concerns, and questions. Knowledge scores were statistically associated with practice scores and degree. Practice scores were positively associated with continuing education in PC, exposure to terminally ill patients, and knowledge and attitude scores. Acute critical care and oncology were found to have lower practice scores than other specialties.
Formal education in palliative care and development of palliative care services are very much needed in Lebanon to provide holistic care to terminally ill patients.
The induction of sedation at the end of life is a much debated practice and not very documented. The goal of this study was to explore the practice from both a clinical and ethical point of view.
Data were collected through semistructured interviews with 19 Quebec physicians working in palliative care.
Doctors' first priority was their patients, not patients' families. Clinically, the therapeutic aim of sedation was strictly to relieve suffering on the part of the patient. Ethically, getting the patient's consent was imperative. The family's consent was only required in cases of incapacity. Generally, sedation and euthanasia were seen as two distinct practices.
There are still very few guidelines regarding end-of-life sedation in Québec, and its normative framework is more implicit than explicit. It should be noted that most of the respondents regarded sedation and euthanasia as two distinct practices.
Palliative and end-of-life care is changing in the United States. This dynamic field is improving care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Methods of integrating current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. Although compilation of evidence for the importance of palliative care specialities is in its initial stages, national research grants have provided support to build the knowledge necessary for appropriate palliative care. Opportunities are available to clinicians for understanding and applying appropriate palliative and end-of-life care to patients with serious and life-threatening cancers.
Informed patient choice is central to modern clinical care but there is a paucity of data about how patients respond to information regarding complex therapies. This qualitative study aimed to understand the attitudes of patients with chronic obstructive pulmonary disease (COPD) toward acute ventilatory support and assess how aids to decision making regarding ventilation affect patients' views of therapy.
A standardized five-stage interview process was used to explore attitudes toward noninvasive ventilation (NIV) and invasive mechanical ventilation (IMV) in 50 stable COPD patients.
Eighty-six percent found demonstration of NIV helpful in decision making compared to 24% with the photographic aid (p < 00.001). Although 96% were willing to receive NIV after a verbal description of the technique, only 76% consented when a photographic aid was shown. When NIV was demonstrated, willingness rose to 84%. While 60% were willing to receive IMV following a verbal description, this decreased to 58% following explanation of alternative treatments to IMV. Patients willing to receive IMV were younger (67 versus 76 years p = 0.016) and had a better functional status (NEADL index 20 versus 15 units p = 0.03). Only 34% had heard of advanced directives of care (ADCs), none had ever issued one but 48% expressed an interest in doing so following explanation of this process.
COPD patients would find both explanation and demonstration of NIV useful in an outpatient setting. Worsening functional status along with advanced age was associated with reduced willingness to receive invasive ventilatory support. Awareness of ADCs was found to be low although almost half of the patients expressed interest in the uptake of ADCs following explanation of the process.
To determine the knowledge, attitudes, and practices of palliative care nurses in Lebanon.
Cross-sectional descriptive survey using self-administered questionnaire; 1873 nurses from 15 hospitals were included.
Non-clinical nurses had better knowledge on the outcomes of palliative care than all other specialties. Oncology nurses had more favourable attitudes than other specialties with regard to informing patients about their diagnosis, patients having the right to 'do-not-resuscitate', involving patients in treatment choices, and respecting their wishes for alternative therapy. Surgical, acute critical care, and obstetric/gynaecology nurses had significantly more negative attitudes towards patients' and families' questions and concerns than other specialties.
Formal education in palliative care and development of palliative care services are needed in Lebanon to provide quality care to terminally ill patients.
We investigated on a nationwide level the attitudes of nurses towards end-of-life decisions (ELDs) that may hasten death and towards their role in those decisions. We took a representative random sample of 6000 nurses in Flanders, Belgium. Response rate was 62.5%. Most nurses agreed with the practice of withholding/withdrawing potentially life-prolonging treatments (93%), with decisions to alleviate symptoms with possible life-shortening side effects (96%) and with the practice of euthanasia (92%). Their support for the different decisions existed regardless of whether they had cared for terminally ill patients or not. Most nurses also thought that they have an important role to play especially in the ELD-making process. Nurses' views on their proper role in the administration of drugs in euthanasia and continuous deep sedation showed a large dispersal. Overall, nurses' work setting determines their opinions on nurses' role in ELDs. In conclusion, nurses accept a wide variety of ELDs being practiced with terminally ill patients.
So far, hardly any experience exists whether end-of-life research on patients' attitudes towards hastened death in Germany is feasible and how it is perceived by the patients.
During the initial phase of a validation study of the German version of the Schedule of Attitudes towards Hastened Death, we documented reasons for non-inclusion.
Of 124 patients seen on the participating palliative care units, 18 (15%) were finally included in the study. Reasons for non-inclusion were mainly due to the clinical status of the patients; the German specific history of involuntary euthanasia during the Nazi regime did not prevent patients to participate.
We conclude that end-of-life research in Germany is indeed feasible, however, faces difficulties similar to the international experience.
Complementary and alternative medicine (CAM) might enhance the quality of life of patients with cancer. The aim of this study was to investigate the current practice of CAM in Japanese palliative care units. A 17-item questionnaire was mailed to all 150 certified palliative care units in Japan, 80% of which responded. In total, 75 institutions (64%) provided at least one modality of CAM. Only 33% of the palliative care units surveyed had any regulations about patient usage of CAM, and 42% rejected some types of CAM because they caused difficulties for other patients (34%), required medical procedures (26%), used fire (5%), or required outside practitioners (4%). In total, 92% of surveyed palliative care units had no regulation and actually provided CAM. The obstacles to the use of CAM included the availability of certified practitioners, costs, added responsibilities for staff members, and insufficient evidence of efficacy. We concluded that Japanese palliative care units generally had a positive attitude toward CAM, and were willing to provide this type of therapy to patients.
The internet provides access to information and evidence that can support palliative care practice. This study aims to evaluate the use and utility of a palliative care website with particular regard to its use and issues for nurses. STUDY DETAILS: A survey of online visitors and a postal survey of staff working in palliative care services were conducted; 134 visitors completed the survey and 371 staff in palliative services responded.
Users of the site found the content credible and over 95% would recommend the site to others. Over 90% of specialist palliative care nurses use online resources and half use the CareSearch website. Awareness of the resource was much lower for registered nurses than specialist nurses working in palliative care.
Understanding attitudes to, and use of, online palliative care resources by nurses working in palliative care services could help to develop these resources to more effectively meet their needs and circumstances.
Since health care professionals play a critical role in discussing advance directives with patients, their own attitudes toward these directives are important. This study examined the factors associated with health care professionals' attitudes toward the health care proxy, one form of an advance directive. Social workers (n= 115) and nurses (n= 98) had generally positive attitudes toward the health care proxy. Factors that predicted attitudes included profession and training in end of life. Health care professionals who had prior training in end-of-life planning had more positive attitudes toward the health care proxy than those who did not have training. Implications for education of health care professionals are addressed.
The development of palliative care is proceeding rapidly in some areas of the world, but major problems continue to exist in several countries and regions. Comparative research evidence to inform palliative care development is limited and can be difficult to obtain, especially for resource poor settings. International collaboration is needed to promote and disseminate an evidence base to support the growth of palliative care. The aims and plans of the newly created International Observatory on End of Life Care are described, together with its orientation to global partnership and collaboration. The Observatory will build on public health models to provide research-based intelligence about palliative care around the world, drawing also on cultural, historical and ethical perspectives.