Objectives: This study aims to identify factors among British community-based adults associated with advance care planning engagement. Factors are then compared among six domains of wishes: medical care, spiritual and religious needs, privacy and peace, dignified care, place of death and pain relief.
Methods: Cross-sectional data were analysed from a stratified random sample of adults across Great Britain (England, Scotland and Wales) who were interviewed on their attitudes towards death and dying. Weighted multivariable logistic regression tested for associations with expressing any end-of-life wishes and then for each separate domain.
Results: Analysis of 2042 respondents (response rate: 53.5%) revealed those less likely to have discussed their wishes were: male, younger, born in the UK, owned their residence, had no experience working in health or social care, had no chronic conditions or disabilities, had not experienced the death of a close person in the last 5 years and feel neither comfortable nor uncomfortable or uncomfortable talking about death. Additional factors among the six domains associated with having not discussed wishes include: having less and more formal education, no religious beliefs, lower household income and living with at least one other person.
Conclusions: This study is the first to be conducted among a sample of community-dwelling British adults and the first of its kind to compare domains of end-of-life wishes. Our findings provide an understanding of social determinants which can inform a public health approach to end-of-life care that promotes advance care planning among compassionate communities.
Objectives: Euthanasia, i.e. Physician Assisted Suicide, is a highly taboo topic, which has grown unusually over the past decade in concomitance with swift advancement in medical care of terminally ill patients. The aim of this study was to assess the knowledge, awareness and attitude of Health Professions Students (HPSs) towards Euthanasia.
Methods: This cross-sectional study was carried out in all Colleges of King Saud Bin Abdulaziz University for Health Sciences (KSAU-HS), Jeddah Campus was conducted from November & December 2019. A predesigned questionnaire written in English containing essential elements about Euthanasia was adopted to achieve the purpose of the study.
Results: A total of 522 students responded positively to the dispensed survey. 290 (55.6%) of respondents were males while 232 (44.4%) were females with a ratio of 1:1.25. We found that majority of HPSs (57%, n=298) were aware of the term euthanasia and the concept behind it. 65.1% (340) of the HPSs understood the accepted definition of euthanasia as “Physician Assisted Suicide”. However, only 19.9% (104) of HPSs agreed to ever favor euthanasia if given a choice while 47.9% (250) of them disagreed. Also, majority of them (61.4% among males and 51.7% among females) agreed that practicing religion influenced their responses to this survey.
Conclusions :The awareness about the euthanasia was fairly good among HPSs of KSAU-HS however this study identifies a dire need of introducing the bioethical concepts of practicing euthanasia and the legal issues surrounding it within the curriculum.
Introduction: Advance directives are legal documents which individuals draw up to declare their treatment preferences and to appoint well-informed proxies to safeguard patient autonomy in critical situations when that individual is temporarily or no longer able to communicate these preferences. On December 22, 2017, the Italian Parliament approved the first law on end of life (“Provisions for informed consent and advance directives” L.219/2017), after a heated public and political debate lasting almost twenty years.
Objective: The aim of this study was to investigate the awareness, knowledge, opinions and attitudes regarding Italian Law 219/2017 and advance directives among the Italian population 15 months after its entry into force.
Methods: A nationwide population-based survey was conducted by a certified public opinion survey company. A sample size of 2000 interviews was planned. A structured questionnaire was developed to investigate awareness, opinions and attitudes concerning the law by a multiprofessional research team. The agreed-on version was pretested on a sample of 70 selected participants.
Results: The sample included 2000 valid interviews; 70.1% of respondents declared they had heard about the law on informed consent and advance directives. Respondents were asked to express their overall opinion on the law’s utility and importance: 88% declared that the law was quite or very important and 76% had a positive attitude towards making/registering advance directives.
Conclusion: The principles of Italian Law 219/2017 are aligned with the ethical sentiment of the vast majority of the Italian population. It is crucial to stimulate discussion to increase knowledge and awareness in order to increase the number of advance directives.
The aim of the research was to conduct the Turkish validity and reliability study of the Frommelt Attitude toward Care of the Dying Scale. The study used a cross-sectional research design. The sample of the study consists of 236 intensive care nurses. The data were analyzed using SPSS 22.0 and SPSS AMOS 22.0 programs. Descriptive statistical methods, reliability analysis, exploratory and confirmatory factor analyses were used in the analysis of the data. According to the findings of the exploratory factor analysis, the scale was divided into six factors as in its original. According to results of the confirmatory factor analysis showed that the goodness of fit of the scale was acceptable level. Cronbach’s alpha coefficients of the Frommelt Attitude toward Care of the Dying and subdimensions were found to be between 0.606 and 0.800. These results showed that the Turkish form of scale was valid and reliable and it had the necessary conditions for using Turkish form.
This study aimed to examine family members’ attitudes and perceptions regarding their choice of care in the event of terminal illness, based on their experience in a caregiver’s role, while a loved one was terminally ill. All participants (N = 10) had cared for an immediate family member with terminal cancer. Snowball sampling was used. Qualitative data were collected through in-depth, semi-structured interviews. The data were transcribed verbatim and analyzed using thematic analysis. Five themes were identified from the data. These included two themes relating to participants’ experience of care, two themes in relation to participants’ attitudes toward the type of care they experienced and a final theme related to the role of religion and spirituality in dealing with loss. The findings of this study support the integration of multidisciplinary healthcare teams and the introduction of holistic care as early as possible within hospitals for individuals with terminal cancer, using the biopsychosocial–spiritual model.
Background: The worldwide need for palliative care is high, especially in mid- income countries like Ecuador, where the percentage of patients receiving such care is very small due to the scarcity of infrastructure and specialized personnel and to the unequal distribution in the country. The objective of this study is to explore the knowledge, attitudes and expectations related to palliative care of the physicians in Ecuador.
Methods: A qualitative study based on 28 semi-structured interviews, from March 2014 to November 2016, with physicians working in four cities in Ecuador recruited through the snowball technique. Thematic analysis was developed supported by the ATLAS.ti software.
Results: Five core themes were identified: (1) training, (2) health policy, (3) professionals’ activities, (4) health services and (5) development of palliative care in Ecuador.
Conclusions: Strategies are needed which intensify the training of medical professional in palliative care, as well as avail the human resources and materials for providing it.
Euthanasia is undoubtedly the protagonist of many of the debates around the end of life both among health staff and in the general population. Considering that nurses provide care for terminally ill patients and support families and patients in their final days, it is essential to know their attitudes towards euthanasia. The aims of the study were to adapt and validate the Attitude Towards Euthanasia scale to a Spanish context, to test the dimensionality and to estimate the reliability of the scale. A cross-sectional study was conducted with a non-probabilistic sample of Spanish health-workers of 201 in a University Hospital in Ciudad Real. A self-reported socio-demographic questionnaire and the Euthanasia Attitude Scale were used for data collection. The psychometric properties of the scale were assessed, including reliability and validity using an exploratory and confirmatory factor analysis. Cronbach’s alpha of the Attitude Towards Euthanasia scale was a = 0.827 and McDonald’s Omega = 0.903. The range of items of homogeneity was from 0.205 to 0.685. For the different exploratory factor analyses carried out, the Bartlett’s test of sphericity was p < 0.001 and the sample index value of Kaiser-Meyer-Olkin was over 0.802. in all cases. We present the factorial weights for three models: The first one assumes a unidimensional solution, the second model was composed by three factors and the third model was composed by four factors. In the confirmatory factor analysis, the three models presented an acceptable fit index. The Attitude Towards Euthanasia scale adaptation to a sample of Spanish health workers has shown, with some limitations, appropriate psychometric properties. There have been several differences between the original factorial solution. It would be necessary to replicate the study to reinforce the findings about the number of factors of the scale.
The escalating number of foodborne diseases and food poisoning outbreaks demand a better call for improved food-handling practices. Hospices are typically described as nongovernmental organizations that offer palliative care to terminally ill patients. The majority of hospice food handlers are not trained in food safety aspects, and services are offered on a voluntary basis. In this study, a descriptive survey design comprising of semistructured questionnaire was utilized to assess the knowledge, attitudes, and practices of the hospice food handlers (n = 100) in hospices around Central South Africa. More than half of the participants (68%) had not taken basic food safety training. The average percentage of the correct answers on the knowledge questionnaire was 66.8%. The participants had a mean age of 35 years (SD = 9.27). Attendance of food safety course had a significant effect on both the practices of using gloves to touch or distribute unwrapped foods ( 2 = 8.411, p-value = .012), and washing hands after using gloves ( 2 = 12.560, p-value = .001). The overall KAP mean score was 78.38. A statistically significant difference was found between the trained and untrained food handlers regarding food safety knowledge (p < .001). There was substantial lack of knowledge regarding the correct temperature for a refrigerator including hot ready-to-eat food.
Background: Voluntary assisted dying (VAD) became legal in the Australian state of Victoria on 19 June 2019 and will be legal in Western Australia from 2021. Other Australian states are progressing similar law reform processes. In Australia and internationally, doctors are central to the operation of all legal VAD regimes. It is broadly accepted that doctors, as a profession, are less in favour of VAD law reform than the rest of the community. To date, there has been little analysis of the factors that motivate doctors’ support or opposition to legalised VAD in Australia.
Aim: To review all studies reporting the attitudes of Australian doctors regarding the legalisation of VAD, including their willingness to participate in it, and to observe and record common themes in existing attitudinal data.
Design: Scoping review and thematic analysis of qualitative and quantitative data.
Data sources: CINAHL, Embase, Scopus, PubMed and Informit were searched from inception to June 2019.
Results: 26 publications detailing 19 studies were identified. Thematic analysis of quantitative and qualitative findings was performed. Three overarching themes emerged. ‘Attitudes towards regulation’ encompassed doctors’ orientation towards legalisation, the shortcomings of binary categories of support or opposition and doctors’ concerns about additional regulation of their professional practices. ‘Professional and personal impact of legalisation’ described tensions between palliative care and VAD, and the emotional and social impact of being providers of VAD. ‘Practical considerations regarding access’ considered doctors’ concerns about eligibility criteria and their willingness to provide VAD.
Conclusion: A detailed understanding of medical perspectives about VAD would facilitate the design of legislative models that take better account of doctors’ concerns. This may facilitate their greater participation in VAD and help address potential access issues arising from availability of willing doctors.
Background: Communities have limited understanding of palliative care, creating barriers to informed choice around consideration of a full range of care options in the event of serious illness. Few empirically tested interventions are available to educate community about palliative care, and ultimately improve timely access to these services.
Aim: To test the acceptability (primary outcome), and feasibility of a narrative approach to public health communication seeking to improve attitudes to possible access to palliative care in the event of serious illness.
Design: Randomised phase II trial with six parallel experimental conditions. Outcomes tested included measures of acceptability, feasibility and change in attitudes to possible access to palliative care post-intervention. Contrasts planned for exploratory testing included format, message content and narrator.
Setting/participants: Community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups.
Results: A narrative approach to public health communication was found to be acceptable to community members, and feasible to deliver online. Exploratory data suggested it immediately improved attitudes towards possible access to palliative care in the event of serious illness, with the narrative detailing a description of the evidence delivered by a healthcare professional appearing to be the most promising strategy.
Conclusions: This study provides preliminary data to inform a future, longitudinal trial evaluating effectiveness and ultimately other evidence-based, public health approaches to improve community engagement with palliative care. Further studies are required to confirm the generalisability of findings to a broader representative sample and other settings including internationally.
Palliative care is a specialized service with proven efficacy in improving patients' quality-of-life. Nevertheless, lack of awareness and misunderstanding limits its adoption. Research is urgently needed to understand the determinants (e.g., knowledge) related to its adoption. Traditionally, these determinants are measured with questionnaires. In this study, we explored Twitter to reveal these determinants guided by the Integrated Behavioral Model. A secondary goal is to assess the feasibility of extracting user demographics from Twitter data-a significant shortcoming in existing studies that limits our ability to explore more fine-grained research questions (e.g., gender difference). Thus, we collected, preprocessed, and geocoded palliative care-related tweets from 2013 to 2019 and then built classifiers to: 1) categorize tweets into promotional vs. consumer discussions, and 2) extract user gender. Using topic modeling, we explored whether the topics learned from tweets are comparable to responses of palliative care-related questions in the Health Information National Trends Survey.
Aim: Nurses have a critical role in providing holistic care for people with life-limiting conditions. However, they experience internal moral conflict and powerlessness when patients request them to assist in the dying process. A scoping review was undertaken to determine what is known about nurses’ perceptions and attitudes of euthanasia.
Review Methods: Several databases were searched that yielded both qualitative and quantitative primary peer-reviewed research studies that focused on nurses, their perceptions and attitudes about euthanasia. Descriptive and explorative analyses of the data set from the research studies were undertaken.
Results: A total of 23 studies were included in the review. Opinions about euthanasia were mixed. Two key concepts emerged from the review: some nurses were positive and/or supportive of euthanasia, while some were negative and/or unsupportive of euthanasia. The main factors associated with being positive and/or supportive were because of (a) extreme uncontrollable pain, unbearable suffering, or other distressing experiences of the patient, (b) legality of euthanasia, and (c) right of the patient to die. The factors that determined nurses’ negative and/or unsupportive attitude included (a) religion, (b) moral/ethical dilemmas, (c) role of gender of the health professional, and, (d) poor palliative care.
Conclusions: The matter of euthanasia has challenged nurses considerably in their aim to deliver holistic care. There were several crucial factors influencing nurses’ perceptions and attitudes, and these were affected by their personal, professional and transpersonal perspectives. The potential implications to nurses relate to education, practice, and research. Nurses need to be informed of existing legislation and provided in-depth education and professional guidelines to help direct action. Further research is needed to explore the impact on nurses’ emotional well-being, clarify their role/s and determine the support they might require when involved with euthanasia.
Background: The importance of advance care planning (ACP) has been recognized in the palliative are of patients with heart failure. It is necessary for dissemination of ACP to characterize the perceptions
of physicians and nurses towards ACP and to promote mutual understanding. The aim of this study is to investigate the perceptions of physicians and nurses concerning ACP for patients with heart failure.
Methods: We conducted a self-administered questionnaire survey with physicians and nurses who belonged to the 427 certified institutions for implantable cardioverter defibrillator (ICD) and/or cardiac
resynchronization therapy (CRT) in Japan. The self-administered questionnaire was originally designed based on the guidelines on palliative care or ACP and previous studies on the barriers of ACP. We asked the participants the recognition about condition/timing to implement ACP, Content of care to be implemented in ACP, and barriers against implementing ACP. A Mann-Whitney U test was performed and r value was calculated an effect size (ES) in order to evaluate the characteristic perceptions among physicians and nurses.
Results: Valid responses were obtained from 163 physicians (38.2%) and 208 nurses (48.7%). Regarding the condition/timing, nurses tended to recognize that ACP should be implemented from earlier clinical
stages than physicians. Regarding the contents of ACP, both physicians and nurses placed emphasis in assessing the patient’s perception of disease progression. The biggest difference was found in the item
“Ask patient about what has been important in life so far”; 78.6% of physicians but 94.2% of nurses chose “it must/should be implemented” (Cohen’s r=0.31). Regarding the barriers, both physicians and nurses
recognized the difficulty in prognosis prediction. The biggest differences were found in the items “Medical staff does not know how to implement ACP for patients and their families” (45.6% of physicians and 70.4% of nurses chose “strongly agree/agree”, r=0.27), and “There is disagreement regarding care goals among team members of different professions” (18.5% in physicians and 43.3% in nurses, r=0.27).
Conclusions: It is suggested that discussions and further studies are necessary concerning the condition/timing of implementing ACP from early stages, specific manuals/protocols and recommendation on rolesharing within a multidisciplinary team.
The objective was to identify the attitudes of progressive neurological disease (PND) patients and their family members regarding end-of-life care, and their worries about dying. The sample included 327 participants. The Attitudes of Patients with PND to End-of-Life Care questionnaire was used to collect the data. Statistically significant differences in the assessment of attitudes towards end-of-life care between patients and family members were identified (p < 0.001). Family members more frequently favored patients being kept alive at any cost; patients more commonly wished to have their end of life under control. Respondents most frequently deferred to doctors when it came to decisions on treatment to keep patients alive. However, both patients and family members wanted patients to be able to decide on their treatment by leaving a written record of their previously stated wishes. The demands of patients and their families regarding end-of-life care should be documented in individual care plans.
Background: Voluntary active euthanasia represents one of the key topics in the contemporary world medicine, law, religious, ethical and moral issues. Serbia considers legalization of this procedure. Between the others, it is important to examine the student’s attitudes regarding this issue.
Methods: Data were obtained from the faculties of law and medicine, from the universities of Kragujevac and Niš, Serbia. Data were collected during the second half of 2017. The research included 214 students. Due to the nature, subject and hypothesis of the research, the authors used descriptive method and the method of the theoretical content analysis.
Results: Generally, 54% of the students are in favor of legalization of the voluntary active euthanasia. 62, 4% would take part in the referendum on the legalization euthanasia.
Conclusion: The results obtained in the survey on euthanasia on a sample of law and medical students in Niš and Kragujevac indicate that choice of the faculty (law or medicine) influences the structure (share) of responses to particular questions to some extent. However, this influence does not provide ground for conclusion that students’ opinion on legalization and application of euthanasia depends on fact they study law or medicine.
Introduction: Intensive care units are contexts in which, due to the remarkable existence of particularly technological resources, interventions are promoted to extend the life of people who experience highly complex health situations. This ability can lead to a culture of death denial where the possibility of implementing futile care and treatment cannot be excluded.
Objective: To describe nurses' perceptions of adult intensive care units regarding the therapeutic futility of interventions implemented to persons in critical health conditions.
Method: Review of the literature following the Scoping Review protocol of the Joanna Briggs Institute. The Population, Concept, and Context mnemonic was used to elaborate the research question and the research was performed using the EBSCOHost search engine in the CINAHL Complete databases, MEDLINE Complete, Cochrane Central Register of Controlled Trials, and Cochrane Database of Systematic Reviews to identify studies published between 1990 and 2019. Seven studies were selected.
Results: Nurses consider that therapeutic futility, a current problem in adult intensive care units, may have a negative impact on persons in critical health conditions and that contributes directly to resource expenditure and moral conflicts and consequently leads to emotional exhaustion.
Conclusion: Due to the complexity of this concept, knowing and understanding people's and families' perceptions is crucial to the decision-making process, for which reason nurses can play a key role in managing these situations.
Bien que prévu par la loi et quels qu’en soient les motifs, le refus de soins émanant du patient déstabilise les soignants. Pour ces derniers, il est important de comprendre les attitudes vis-à-vis de ce refus, les liens avec les pratiques professionnelles afin de proposer des repères pour une démarche clinique.
BACKGROUND: Advanced cancer in young parents (PWAC) can increase dying concerns, the fluctuating thoughts, or feelings, conscious, or unconscious, about an approaching death by a person facing a terminal illness or a family member coping with the impending death of a loved one. However, limited research has been conducted to identify dying concerns in an ill parent as the research has focused on older adults.
OBJECTIVE: Our goal was to identify dying concerns that PWAC are expressing and to understand how these concerns affect measurable outcomes.
METHOD: CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection were searched. Articles included were samples of PWAC, peer-reviewed, and published within the last 10 years. Elderly or pediatric populations, PWAC with adult children, and early-stage cancer were excluded. The initial search resulted in 1,526 articles, 18 were identified as potentially relevant. Fourteen articles were identified and reviewed.
RESULTS: PWAC expressed concerns for their children (n = 11), concerns for their co-parent (n = 4), and personal concerns (n = 11). Additionally, PWAC have decreased quality of life, have significant emotional and psychological distress, and have increased family dysfunction in relation to their concerns. Samples limit the generalizability of the findings. Majority of the articles consisted of White, upper, middle-class (n = 8) women (n = 7) diagnosed with breast cancer (n = 11) within nuclear families (n = 11).
SIGNIFICANCE OF RESULTS: Dying concerns are described in the literature from a fairly narrow sample of PWAC. Future research should focus on recruiting participants from diverse backgrounds, genders, diagnosis types, and non-nuclear families. Identifying concerns for the co-parent would also add to the understanding of dying concerns.
Le refus de soins interroge les soignants à titre individuel et collectif. Il demande d’être expliqué et compris car il peut s’agir d’une forme d’expression chez certains patients. Ces situations difficiles nécessitent d’avoir une attitude adéquate et notamment de cultiver un travail en équipe pour que soignant et soigné se sentent reconnus et respectés.
Introduction: The mortality of patients with neck-of-femur (NOF) fractures remains high, with increasing recognition of a subgroup of patients with predictable mortality. The role of palliative care in this group is poorly understood and underdeveloped. This research aims to investigate current clinician attitudes toward palliative care for patients with NOF fracture, and explore processes in place for early identification for patients nearing the end of life.
Materials and Methods: An online survey was constructed with reference to National Institute for Health and Clinical Excellence end-of-life guidelines (CG13) and distributed to multidisciplinary teams involved in the care of NOF fracture patients in 4 hospitals of contrasting size and location in the United Kingdom.
Results: Forty health-care professionals with a broad range of seniority and roles responded. The palliative care team was felt to have several potential roles in the care of NOF fracture patients, but there was difference of opinion between specialties about what these were. A number of barriers to palliative referral were identified, including stigma and active surgical management. The majority (75%) felt that all NOF fracture patients should have a discussion about ceiling of care, with difference of opinion about who should do so, and when.
Discussion: As the elderly population has grown, so too has the volume of NOF fracture patients. It is increasingly important to identify and escalate patients who have poor prognosis following hip fracture and ensure they benefit from palliative care where appropriate. This survey demonstrates a barrier to addressing the care of these patients and a lack of consensus on identification and referral to appropriate palliative care planning.
Conclusions: There should be close communication between specialties with regard to requirements for palliative care in NOF fracture patients, with ongoing education and clear local and national guidance to ensure they receive the right care at the right time.