BACKGROUND: Palliative care is aimed at improving the quality of life of an individual with chronic noncommunicable disease and their care partners. Limitations in the provision of palliative care are mainly lack of knowledge and experience by nurses, fear of treating palliative persons, loss of control over treatment and fear of providing poor-quality palliative care to persons and care partners.
AIM: The aim of this study was to investigate the perception, knowledge and attitudes of palliative care by nurses who use palliative care approaches in practice, as well as the difference in perception, knowledge and attitudes of palliative care between nurses in Slovenia and Finland.
METHODS: We conducted a cross-sectional descriptive study. The survey included 440 nurses in clinical environments in Slovenia and Finland with a completed bachelor, master or doctoral level of education.
RESULTS: We found statistically significant differences between both countries in the perception of palliative care. Differences between the two countries in the knowledge of palliative care were not confirmed. We confirmed statistically significant differences between both countries in the attitudes of palliative nursing care.
CONCLUSION: Early person-centred palliative care is an important part of the holistic and integrative treatment of a person who has a disease with disturbing symptoms. For such an approach, it is important to educate nurses about knowledge, expectations, values and beliefs in developing a concept of person-centred palliative care to improve quality of life. The better perception, knowledge and attitudes of palliative care by nurses may help persons to improve and raise their quality of life, as well as diminish stress in their care partners and improve quality of life.
OBJECTIVE: Describe the knowledge of physicians in an Oncology Clinic and a school hospital, of both the private health network, located in Manaus-AM about palliative care (PC), and define the role of religion in medical care of patients with advanced severe illness, with no disease modifying therapy.
METHOD: This is a cross-sectional, descriptive, and observational study. After signing the Free and Informed Consent Term, the physicians included completed a professional membership record and answered questions about a hypothetical clinical case through multiple choice answers. The clinical case described a patient with advanced chronic disease not a candidate for disease-modifying therapy in the final phase of life. The questions involved aspects related to nutrition, venous access, and hospitalization in the intensive care unit (ICU).
RESULTS: A total of 31 physicians from different specialties were included. About 67.7% consider their knowledge about PC insufficient, and none of the participants is unaware of this modality of care. The prevalence of invasive behaviors related to patient nutrition, venous access, and indication of ICU and cardiopulmonary resuscitation (CPR) was higher among physicians without religion (HR = 1.84; HR = 2.89; HR = 1.04, respectively) than among those who follow a religion.
CONCLUSION: Absence of religion is associated with higher invasive behaviors on the part of physicians. Further studies are needed to better define this relationship.
Most people avoid talking about death with children even when required, as they are unsure at what age children start understanding the concept of death. Although this question has been researched in the west, it has not been answered in the Indian context. Therefore, this study was conducted in India with 25 children (14 females, 11 males; 3-5 years), using play and joint story construction method, along with semistructured interviews. Results indicated that majority of the children understood that everyone has to die, including significant people like their own parents (i.e., universality) and also, many children understood that death is final (i.e., irreversibility). However, only few children understood that all cognitive/behavioral functions cease at death (i.e., nonfunctionality). In conclusion, only a small proportion of preschoolers seems to have had a mature concept of death.
Although most individuals prefer to die at home, approximately 60% of Americans die in the hospital setting. Nurses are inadequately prepared to provide end-of-life (EOL) care because of cure-focused education. Friends and family of dying patients report poor quality of death largely as a result of inadequate communication from health care professionals about the dying process. The purpose of this project was to improve nursing knowledge and comfort related to EOL care through use of the CARES tool and to improve the EOL experience of families of dying patients in the hospital setting through use of Final Journey. These acronym organized tools were developed based upon the common symptom management needs of the dying including Comfort, Airway, Restlessness and delirium, Emotional and spiritual support, and Self-care. The CARES tool for nurses improved nursing knowledge and comfort related to EOL care and common symptom management needs of the dying and also enhanced nurses' confidence in communicating about the dying process with friends and family. Final Journey, the friends and family version of the CARES tool, reinforced EOL information for friends and family, helped nurses answer difficult questions, and promoted and enhanced communication between health care professionals and friends and family of the dying.
The aims of this study were to assess the palliative care knowledge among nurses in Saudi Arabia and to identify the demographic factors influencing such knowledge. A convenience sample of 365 nurses working in 2 hospitals in Saudi Arabia was surveyed using the Palliative Care Quiz for Nursing in this cross-sectional study. The mean score of the respondents in the Palliative Care Quiz for Nursing was 8.88 (SD, 1.75), which is interpreted as low knowledge. In terms of the theoretical categories of the scale, 9 of the 13 items in the category pain and symptom management were answered correctly by the majority of the respondents, whereas all the items in the psychosocial and spiritual care category were answered incorrectly by the majority of the respondents. Type of hospital, age, and attendance to palliative care education in the last 6 months were revealed as significant factors that influence the nurses’ palliative care knowledge. Continuing education on palliative care should be implemented by hospital administrations, and palliative care education should target the weakness of the nurses, especially those revealed in the study, such as on the psychosocial and spiritual care, some aspects of pain and symptom management, and philosophy and principles of palliative care.
BACKGROUND: Guidelines for device-based therapy of cardiac rhythm abnormalities were updated in 2008 including discussions prior to implantation with implantable cardioverter defibrillator (ICD) recipients regarding end-of-life (EOL) choices.
OBJECTIVES: To explore patients' knowledge of the function of the ICD at EOL.
METHODS: ICD recipients from Central Kentucky and Melbourne, Australia completed the Experiences, Attitudes, and Knowledge of EOL.
RESULTS: Of the 240 ICD recipients, 76% reported that they have never had discussions with their health care provider regarding the withdrawal of defibrillation therapy. A total of 38% believed that turning off the ICD shocks was the same as active euthanasia and that disabling defibrillation therapy required surgical intervention; 37% believed that once defibrillation was disabled, it could not be enabled again.
CONCLUSIONS: Adherence to guidelines regarding EOL discussions with ICD recipients was minimal from the patients' perspective. Most patients may hold alarming misperceptions that could interfere with optimal EOL care.
Background: Medical discipline in India focuses on cure rather than comfort care. Palliative care is concerned with improving quality of life and relieving sufferings in patients with advanced incurable terminal diseases. Palliative care in India is still in infancy stage due to lack of knowledge, attitude and skills among health care providers. The reason being lack of training in under graduate as well as postgraduate teaching curriculum and lack of sensitization among policy makers.
Aims and Objectives: To assess the awareness, interest, practices and knowledge in palliative care among medical professionals working in a tertiary care hospital.
Materials and Methods: All participants were mailed proforma to be filled in a fixed format including details of their qualification, demographic data, their field of work, their training in palliative care and multiple choice questions regarding awareness interest, practices and knowledge of palliative care.
Results: Out of 186 respondents, 56% had not received any basic training in palliative care. 81% wanted palliative care education to be included in undergraduate curriculum. Poor program was identified as the most common barrier in learning palliative care. 77% respondents had no idea about home based palliative care services. 50.8% patients dies in hospital in their terminal stage. 88% were interested in learning safe opioid practices. Although 89.8% were aware of the need of palliative care in metastatic cancer but less than 50% were aware of the fact that palliative care is also required in MDR-TB and mental illness.
Conclusion: This study reflects data of an apex cancer institute of the country. The result of awareness is not very encouraging despite a dedicated palliative care department. So, we can assume what will be the palliative care status in other parts of India where there is no palliative care at all.
Recommendation: We strongly recommends that palliative care teaching should be incorporated in undergraduate curriculum to sensitize the students from the beginning. Budding residents in their learning phase can play an important role by learning and providing palliative care as the first person to come into contact with the patients are residents. There is a strong need of spreading palliative care awareness all over the country.
BACKGROUND: Advance care planning (ACP) is an essential skill for clinicians, yet trainees feel inadequately prepared to conduct ACP discussions. Optimal teaching methods and timing are unknown.
AIM: We designed a curricular intervention to expose second-year medical students to the process of ACP, aiming to improve their ACP knowledge and confidence.
DESIGN: The intervention consisted of a case-based workshop facilitated by a physician experienced in ACP ("facilitated ACP workshop"), which was added to an existing multifaceted ACP curriculum (longitudinal senior mentor program including multiple visits with a volunteer older adult, completion of an electronic ACP learning module and reflective writing exercise). The control group received the existing ACP curriculum only, while the intervention group received the existing curriculum plus the facilitated ACP workshop. Both groups completed an ACP knowledge assessment and confidence survey at the conclusion of the curriculum.
SETTING/PARTICIPANTS: Two consecutive classes of second year medical students, single academic hospital.
RESULTS: No statistically significant differences in ACP knowledge or confidence were seen post-intervention. Overall confidence with ACP tasks remained relatively low despite a multifaceted ACP curriculum.
CONCLUSIONS: Future studies should investigate longitudinal, experiential ACP learning, and seek to optimize ACP teaching strategies and timing.
CONTEXT: Lack of knowledge or misconceptions about palliative care (PC) can serve as barriers to accessing palliative care for seriously ill patients. Although self-reported rates of PC knowledge have been increasing, little is known about how self-reports relate to actual PC knowledge.
OBJECTIVE: To determine the prevalence of PC knowledge and the extent to which those reporting they are knowledgeable about PC have actual knowledge of basic PC principals.
METHODS: We used the Health Information National Trends Survey 5, Cycle 2, a nationally representative dataset to describe the prevalence of self-report PC knowledge. We conducted chi-square to compare self-rated PC knowledge level with actual knowledge. Finally, we ran a logistic regression to examine if self-reported knowledge level, age, and cancer history were associated with actual PC knowledge.
RESULTS: About 34% of participants self-reported having at least some knowledge of PC, and 41% of those reporting familiarities with PC were able to answer all three basic PC questions correctly. Rates of correct responses for cancer patients were similar (42%) to the general sample and older adults were lower (35%). Compared with those with less than a high school education, people with a bachelor's degree and post-baccalaureate degree had higher odds ratio (21.07, 23.07 respectively) of actual understanding of PC.
CONCLUSIONS: We found that self-reported PC knowledge may not reflect actual PC knowledge. Physicians should carefully explain PC when introducing it to patients. Additionally, this PC information should be provided at a low literacy level to ensure widespread understanding of the service.
Background: Palliative care can alleviate symptom burden, reduce psychosocial distress, and improve quality of life for patients suffering from serious or life-threatening illnesses. However, the extent to which U.S. adults are aware of or understand the goals and benefits of palliative care is not well understood. Public awareness of palliative care is necessary to change norms and create demand, and as such, limited awareness may be a significant barrier to palliative care uptake. An assessment of current palliative care awareness in the United States is needed to inform the health care sector's improving palliative care communication and delivery.
Objective: To examine the prevalence of palliative care awareness among a nationally-representative sample of U.S. adults and to identify sociodemographic and health-related characteristics associated with palliative care awareness.
Design: Weighted data from the Health Information National Trends Survey (HINTS 5, Cycle 2 , N = 3445) were used to produce frequencies of the characteristics, and associations with palliative care awareness were determined through multiple logistic regression.
Conclusions: These data suggest there is limited awareness of palliative care in the United States, despite its documented benefits. Addressing this awareness gap is a priority to change norms around using palliative care services. Community- and population-based interventions are necessary to raise awareness and inform the public about palliative care.
A significant proportion of secondary school pupils in the UK have experienced the death of someone close. Bereavement in childhood can have a significant and long lasting impact. The aim of this study was to explore how pupils aged between 12 and 18 understand major loss, death and dying, whom they talk to and the support they access at these times, and their awareness of the range of support available to them. A total of 31 pupils, 108 parents and 37 staff from a large Scottish secondary school took part and data was collected using online questionnaires. A high proportion of pupils had experience of major loss or bereavement and showed significant awareness of their feelings and responses to these. It appears that young people primarily seek support from family and friends, but the role of peers is less well recognised by parents and teachers. The school was recognised as a source of support mainly by teachers.
Background: Responding to an epidemic of opioid-related deaths, guidelines and laws have been implemented to promote safe opioid prescribing practices.
Objective: This study evaluates differences in screening practices and knowledge of laws between oncologists and cardiologists who prescribe opiates.
Design: Surveys regarding screening practices and knowledge of opioid prescribing laws were distributed in March 2017 to oncology and congestive heart failure (CHF) clinicians at the University of Virginia. Chi-square and Wilcoxon rank sum tests were used.
Results: Forty-six of 129 (35.6%) oncology providers and 7 of 14 (50%) CHF providers reported prescribing opiates in their clinic with usable survey results. The majority of oncology (65.22%) and cardiology (85.71%) providers report screening for substance abuse “when indicated” (p = 0.053). Only 19.6% of oncologists reported always using the prescription monitoring program (PMP), while 71.43% of cardiologists reported using it always (p = 0.014). Of the oncology providers, 66.67% report never using the urine drug screen (UDS), while 86.7% of cardiologists reported using it “when indicated” (p = 0.0086). Up to 34.78% of the oncologists and 57.14% of the cardiologists reported of never screening the family members for misuse (p = 0.317). Knowledge of laws was similar between groups, with 14.29% of cardiology and 17.39% of oncology providers reporting no knowledge of opioid prescribing laws (p = 0.2869).
Conclusions: Routine screening for substance misuse risk was uncommon for both groups, but cardiology providers were more likely to use the PMP or UDS. Knowledge gaps regarding Virginia laws were noted in both groups. Improved education regarding best practices and laws, as well as programs to promote screening, is needed for all providers.
In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples' ability to enact moral agency in making such decisions.
OBJECTIVE: Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.
METHOD: Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term "palliative care" and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., "Palliative care is the same as hospice"). Result: More than one-half of caregivers (55%) had "never heard" of palliative care; 19.2% knew what palliative care was and "could explain it to someone else." In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% "strongly" or "somewhat" agreed that "Palliative care is the same as hospice"; another 10.5% "didn't know." Similarly, 40% reported that "When I think of palliative care, I automatically think of death."
SIGNIFICANCE OF RESULTS : One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.
PURPOSE OF REVIEW: End-stage liver disease (ESLD) is associated with high symptom burden, poor quality of life, and significant healthcare costs. Palliative care, which is not synonymous with hospice or end-of-life care, is a multidisciplinary model of care that focuses on patient-centered goals with the intent of improving quality of life and reducing suffering. This review will summarize current literature supporting the benefits of early integration of palliative care in patients in this population.
RECENT FINDINGS: Advance care planning (ACP) and goals of care discussions have been associated with improved quality of life, decreased anxiety, and improved satisfaction with care for both the patient and the caregiver. These discussions are beneficial to all patients with ESLD, including those listed for liver transplantation.
SUMMARY: Despite the resounding benefits of palliative care for patients with other advanced diseases, palliative care remains underutilized in liver disease. There is an urgent need for education of hepatology/transplant providers as well as development of society guidelines to help dissemination and acceptability of palliative care for patients with ESLD.
Use of an implantable cardioverter defibrillator (ICD) is an established therapy for the prevention of sudden cardiac death. However, at the end of life, these devices can prolong the dying experience, causing physical and psychological trauma. Patients are often unaware of their options regarding ICD management at the end of their life, which highlights the need for health professionals to have these discussions with patients. This study aimed to identify patients' knowledge and opinions about their ICD and the factors influencing their knowledge and opinions. Of the 30 participants in this study, 59% had sufficient knowledge about ICDs. There was no relationship between knowledge and time since implantation (p=0.11). A relationship existed between knowledge and age; those that were older were better informed (p=0.008). The authors conclude that patient education and communication are essential for patients with ICDs to enhance decision-making about ICD management at the end of life.
Access to hospice care is widely provided in Western countries, but the supply of such service is still in its initiative stage in China. As relatives are often involved in end-of-life decision making in China, a better understanding of their cognitions toward hospice care would help policy makers and physicians to overcome the barriers of providing such service. Thus, we conducted the study to assess the level of knowledge and attitudes among Chinese outpatients and family members regarding hospice care.A cross-sectional study was conducted in Peking University Third Hospital and Peking University Shougang Hospital. Trained interviewers recruited outpatients or family members in two hospitals as a convenience sample to complete an anonymous face-to-face survey on demographic information, knowledge, and attitudes regarding hospice care.A total of 550 respondents completed this survey. Only 107 (19.5%) reported that they had known or heard of hospice care, with a mean knowledge score of 2.8 (standard deviation = 1.6). Of the respondents, 69.5% answered "strongly agree" or "agree" regarding the importance of providing hospice care in China. Participants who had known of hospice care were more likely to have favorite attitudes toward it.The awareness rate of hospice care is low in the study, which may lead to poor attitude and low enrollment rate. Considering the increasing evidence to support the improved outcomes of patients and family members associated with hospice care, the public education on its scope of services, benefits, and limitations is needed in China.
This study aimed to investigate physicians' and nurses' knowledge and attitudes toward advance directives (ADs) for cancer patients, which empower patients to take decisions on end-of-life needs if they lose their capacity to make medical decisions. A cross-sectional study was conducted using convenience sampling. The outcomes were responses to the knowledge and attitude questions, and the main outcome variables were the total scores for knowledge and attitudes toward ADs. This study included 281 physicians and nurses (60.5%). Most physicians were men (95, 80.5%), whereas most nurses were women (147, 86.5%). The mean (standard deviation; SD) total knowledge score was 6.8 (4.0) for physicians and 9.1 (3.0) for nurses (p < 0.001). There was a significant difference in the total knowledge score between nurses and physicians, with an adjusted mean difference of 1.54 (95% confidence interval [CI]; 0.08-2.97). Other significant independent predictors of knowledge of ADs were female sex (1.60, 95% CI; 0.27-3.13) and education level (master's versus bachelor's: 1.26, 95% CI; 0.30-2.33 and Ph.D. versus bachelor's: 2.22, 95% CI; 0.16-4.52). Nurses' attitudes appeared to be significantly more positive than those of physicians, and the mean total attitude score (SD) was 19.5 for nurses (6.2) and 15.1 (8.1) for physicians (p < 0.001). The adjusted mean difference (95% CI) for nurses versus physicians was 3.71 (0.57-6.98). All participants showed a high level of knowledge of ADs; however, nurses showed considerably more positive attitudes than physicians.
BACKGROUND: Concerns over the creation of advance directives (ADs) and the factors associated with treatment directive decisions among Korean community-dwelling older people with chronic diseases have rarely been addressed.
OBJECTIVES: This study aimed to examine knowledge, attitudes and barriers/benefits regarding ADs and their associations with AD treatment preferences among chronically ill, low-income, community-dwelling older people.
METHODS: Using a descriptive, correlational design, older people who were recipients of home visiting service for chronic disease management participated in this study. Home visiting nurses collected data on knowledge, attitudes and perceived barriers/benefits and treatment directives using questionnaires during home visits.
RESULTS: Older people (N = 112, mean age = 74.9 years, women = 83.9%) who had chronic diseases such as hypertension (56.3%), diabetes mellitus (40.2%) and cardiovascular disease/stroke (22.3%) participated. Approximately half of the participants preferred hospice care (54.5%), while a few of them preferred aggressive treatments: cardiopulmonary resuscitation (CPR) (14.3%), ventilation support (9.8%) and haemodialysis (8.9%). Being married was associated with the likelihood of preferring CPR (odds ratio [OR] = 11.79) and ventilation support (OR = 9.99), higher education with CPR (OR = 1.23) and haemodialysis (OR = 1.16), and having a cardiovascular disease (CVD)/stroke with CPR (OR = 6.46) and hospice care (OR = 3.06). Among the modifiable factors, greater perceived barriers increased the likelihood of CPR preference (OR = 1.12) but decreased the likelihood of hospice care preference (OR = 0.96). Greater perceived benefits decreased the likelihood of CPR preference (OR = 0.81) and ventilation support (OR = 0.89), and AD knowledge decreased the likelihood of haemodialysis preference (OR = 0.23).
CONCLUSION: The multidimensional factors were differently associated with each of the AD treatment preferences. Modifiable factors, including perceived barriers and benefits and knowledge, should be improved to help low-income, community-dwelling older people select adequate AD treatment preferences.
IMPLICATIONS FOR PRACTICE: Additional information regarding AD treatments and some modifiable and non-modifiable correlates can be integrated into primary and palliative/supportive care in public health. The current home visitation service may also benefit from incorporating AD discussions while extending the service to embrace AD issues in addition to disease management.
CONTEXT: It is especially important that patients are well-informed when making high stakes, preference-sensitive decisions like those on the Physician Orders for Life-Sustaining Treatment (POLST) form. However, there is currently no way to easily evaluate whether patients understand key concepts when making these important decisions.
OBJECTIVES: To develop a POLST knowledge survey.
METHODS: Expert (n = 62) ratings of key POLST facts were used to select items for a POLST Knowledge Survey. The survey was administered to nursing facility residents (n = 97) and surrogate decision-makers (n = 112). A subset (n = 135) were re-administered the survey after a standardized advance care planning discussion to assess responsiveness of the scale to change.
RESULTS: The 19-item survey demonstrated adequate reliability (α = 0.72.). Residents' scores (x = 11.4, standard deviation 3.3) were significantly lower than surrogate scores (x = 14.7, standard deviation 2.5) (p < .001). Scores for both groups increased significantly following administration of a standardized advance care planning discussion (p < .001). Although being a surrogate, age, race, education, cognitive functioning, and health literacy were significantly associated with higher POLST Knowledge Survey scores in univariate analyses, only being a surrogate (p < 0.001) and being white (p = 0.028) remained significantly associated with higher scores in multivariate analyses.
CONCLUSION: The 19-item POLST Knowledge Survey demonstrated adequate reliability and responsiveness to change. Findings suggest the survey could be used to identify knowledge deficits and provide targeted education to ensure adequate understanding of key clinical decisions when completing POLST.