Palliative care has potential to improve quality of life and goal-concordant care for patients with adult congenital heart disease (ACHD). However, it is rarely employed prior to critical illness because the best methods for implementation are not well-defined. We qualitatively evaluated ACHD patients' understanding of and opinions regarding palliative care and advance care planning (ACP) to better define the needs of this population. We conducted a thematic analysis of 25 semi-structured interviews with patients with ACHD in which we assessed participants' perspectives on the need for, and barriers and facilitators to, the use of palliative care and ACP. In a group of participants with ACHD (mean age 38, 48% male) classified as simple (24%), moderate (32%), or complex (44%), we identified 4 major themes: 1) using knowledge to combat future uncertainties; 2) unfamiliarity with and limited exposure to palliative care and ACP; 3) facilitators and barriers to engaging in palliative care and ACP; and 4) importance of timing and presentation of ACP discussions. In conclusion, participants expressed a desire for knowledge about ACHD progression and treatment. They supported routine incorporation of palliative care and ACP and identified related facilitators and barriers to doing so. Importantly, timing and format of these discussions must be individualized using shared decision-making between clinicians, patients, and their families.
BACKGROUND: Nurses have a primary role in providing palliative and end-of-life (EOL) care. Their knowledge of EOL care, attitudes toward care of the dying, and palliative care self-efficacy are important in care delivery. Little is known regarding palliative care preparedness among Mongolian nurses. This study examines palliative care knowledge, attitude towards death and dying, and self-efficacy among Mongolian nurses, and examines predictors of self-efficacy.
METHODS: A cross-sectional descriptive study was conducted. Participants were 141 nurses employed at the National Cancer Center in Mongolia. Data was collected using a self-administered questionnaire.
RESULTS: The median score for the knowledge of palliative care was 8.0/20. "Psychosocial and spiritual care" was the lowest score on the palliative care knowledge subscale. The mean score for attitude toward care of the dying was 69.1%, indicating positive attitudes. The mean score for the palliative care self-efficacy was 33.8/48. Nurses reported low self-efficacy toward communicating with dying patients and their families, and managing delirium. Palliative care knowledge and duration of experience as an oncology nurse significantly predicted self-efficacy toward palliative care, accounting for 14.0% of the variance.
CONCLUSIONS: Palliative education for nurses should address the knowledge gaps in EOL care and focus in increasing palliative care self-efficacy. Considering palliative care knowledge and nursing experience as an oncology nurse were significant predictors of self-efficacy toward palliative care, more effort is needed to fill the knowledge gaps in EOL care among nurses, especially for less experienced nurses.
AIMS AND OBJECTIVES: The purpose of this study is to elucidate the attitudes and knowledge of nursing home (NH) staff involved in the decision-making process surrounding tube feeding for people with advanced dementia, and regarding palliative care and eating difficulties in this population.
BACKGROUND: Dementia's final stage is associated with eating difficulties. "Comfort feeding" is the approach endorsed by the American Geriatrics society for those with advanced dementia and eating difficulties. Despite this, tube feeding remains a persisting practice in NHs in Israel.
DESIGN: Qualitative descriptive study.
METHODS: 27 NH employees from different sectors employed by seven NHs in Northern Israel underwent semi-structured, face-to-face interviews. The COREQ checklist was used to aid with reporting and analysis of results.
RESULTS: In Israel, there is an emerging palliative care discourse in caring for people with advanced dementia living in the NH setting. However, many interviewed didn't demonstrate an accurate understanding of this term or of the term "comfort feeding". Several barriers toward implementation of palliative care were identified and include a lack of formal education regarding nutrition in advanced dementia, socio-economic factors and their association with the two types of NHs operating in Israel (those with exclusively private funding, and those reimbursed by the Ministry of Health).
CONCLUSIONS: Interviews with NH staff regarding eating difficulties in advanced dementia shed light on the palliative care discourse, which is in a liminal stage in many countries. The themes which emerged may help inform future recommendations regarding palliative care in general and more specifically in NH residents with advanced dementia, in countries where policy is still being developed and refined.
RELEVANCE TO CLINICAL PRACTICE: Understanding barriers toward implementation of a palliative approach and comfort feeding specifically could improve the care for people with advanced dementia in the NH setting.
BACKGROUND: Public knowledge and awareness of palliative care (PC) is important to its effective use. However, it remains unclear whether the geographic variation in knowledge of PC exits in the United States. This study examined the national geographic variation in knowledge of PC.
METHODS: The study sample was obtained from the 2018 National Cancer Institute's Health Information National Trends Survey. Basic knowledge of PC, goal concordant treatment, misconceptions, and primary information source of PC were compared across 4 census regions. Multivariable logistic regression was used to examine factors associated with awareness of PC among 9 census divisions.
RESULTS: A total of 3194 respondents (weighted sample size: 229 591 005) were included in this study. Overall, 29% of all respondents reported having knowledge of PC; 32.9% of those residing in Northeast had some knowledge of PC, followed by 30.8% in the South, 26.2% in Midwest, and 25.6% in West. By census divisions, respondents residing in 3 divisions were more likely to have PC knowledge (New England, odds ratio: 3.06, 95% CI: 1.48-6.32, P = .003; South Atlantic, odds ratio: 1.96, 95% CI: 1.15-3.35, P = .014; Pacific, odds ratio: 1.86, 95% CI: 1.12-3.09, P = .018) compared to those in the Mountain division.
CONCLUSIONS: The variation of PC knowledge on census division and state level in 2018 was consistent with the real-world geographic disparities in the availability of PC programs. These findings represent an opportunity for minimizing the gap of geographic disparity by initiating strategic programs and promoting PC programs nationwide.
Background: This study is the first to document knowledge-base and knowledge attitudes about cultural competence and religious literacy in hospice and palliative care in Cyprus.
Objective: The aim of this article is to investigate and document the knowledge-base and attitudes toward advancing knowledge and expertise of hospice and palliative care professionals in Cyprus.
Measurements: A cross-sectional self-administered online survey, which reached 80 hospice and palliative care professionals employed in the sector, was used. The response rate was 64%, which increases the generalizability of the results. Forty-one surveys were completed fully and included in the study. The study was approved by the Ethics Committee of the Frederick University in Cyprus (EEBK EP 2019.01.28).
Results: This study shows that self-awareness, reflexivity, and respect toward the other and other people's culture and religion are associated with the current knowledge-base of the professionals, as well as attitudes toward future learning opportunities, lifelong learning, and initiating learning between professionals and agencies. The results present three themes: knowledge development, knowledge empowerment, and knowledge exchange.
Conclusions: Professionals and organizations need to nurture and promote lifelong learning, supervision, and enable individual practitioners to engage with activities that will enhance their self-awareness, reflexivity, and attitude toward the unique identities of others.
Background: To know and assess the experience and knowledge among primary care pediatricians about pediatric palliative care in the Principality of Asturias (Spain).
Methods: A descriptive and cross-sectional analysis was conducted using a survey among primary care pediatricians in the Principality of Asturias between May and June 2018.
Results: The majority of participants (77%) did not receive previous training, and 100% considered that their knowledge on the subject was insufficient, although 37% had occasionally attended to palliative care patients. Almost all participants (97%) considered that a pediatric palliative care unit is necessary.
Conclusions: The knowledge of primary care pediatricians about pediatric palliative care is deficient in the Principality of Asturias, a region where no exclusive pediatric unit exists. It would be interesting to seize the opportunity to improve the training of these pediatricians, given their great willingness, and to incorporating the subject into colleges and medical intern formation as well.
BACKGROUND: Palliative care is an essential part of medical practice but it remains limited, inaccessible, or even absent in low and middle income countries.
OBJECTIVES: To evaluate the general knowledge, attitudes, and practices of Mozambican physicians on palliative care.
METHODS: A cross-sectional observational study was conducted between August 2018 and January 2019 in the 3 main hospitals of Mozambique, in addition to the only hospital with a standalone palliative care service. Data was collected from a self-administered survey directed to physicians in services with oncology patients.
RESULTS: Two hundred and seven out of 306 physicians surveyed answered the questionnaire. The median physician age was 38 years. Fifty-five percent were males, and 49.8% residents. The most common medical specialty was surgery with 26.1%. Eighty percent of physicians answered that palliative care should be provided to patients when no curative treatments are available; 87% believed that early integration of palliative care can improve patients' quality of life; 73% regularly inform patients of a cancer diagnosis; 60% prefer to inform the diagnosis and prognosis to the family/caregivers. Fifty percent knew what a "do-not-resuscitate" order is, and 51% knew what palliative sedation is. Only 25% of the participants answered correctly all questions on palliative care general knowledge, and only 24% of the participants knew all answers about euthanasia.
CONCLUSIONS: Mozambican physicians in the main hospitals of Mozambique have cursory knowledge about palliative care. Paternalism and the family-centered model are the most prevalent. More interventions and training of professionals are needed to improve palliative care knowledge and practice in the country.
OBJECTIVE: China is home to one-fifth of the world's population. In the setting of a growing and aging population as well as the designation of palliative care access as a human right in 2013, the implementation of palliative care in China gains special importance. Palliative care education is an important precondition to ensure a nationwide access to palliative care. This systematic review details the status of under- and postgraduate palliative care education in China, examining both the students' and physicians' perception, knowledge, and skills in palliative care, and the available educational interventions and programs.
METHOD: Four databases were searched in September 2018, using considered search terms. Titles, abstracts, and, if necessary, full texts were scanned to identify publications matching the inclusion criteria.
RESULTS: Nine publications were included. They revealed six findings: palliative care education is lacking in both under- and postgraduate medical education, only a few programs exist. Palliative care as a concept is well known, detailed knowledge, and practical skills are less developed. Chinese physicians consider palliative care an important field to be developed in cancer care, yet the majority of healthcare professionals are not willing to work in palliative care services. Communication should be a main emphasis in palliative care education, especially in undergraduate training. Finally, there is no highly qualified research on under- or postgraduate palliative care education in Mainland China.
SIGNIFICANCE OF RESULTS: These findings suggest that palliative care education in China is in demand and should be systematically integrated into medical education. Further research on the topic is urgently needed.
BACKGROUND: Many Intensive Care Unit (ICU) deaths include patient and family suffering. While there is a need to include palliative care in the ICU, such care is often unavailable.
OBJECTIVES: To determine whether a course in ICU Palliative Care was associated with changes in participants' palliative care knowledge, attitudes and practices.
METHODS: Four cohorts of a national Israeli course in ICU palliative care (N = 122) were followed. Data were collected on the first and last day of a six-month course and 2-5 years later.
RESULTS: Statistically significant differences were found in palliative care attitudes and practices, with knowledge levels and quality of death and dying stable after course completion. Participants reported obtaining knowledge and skills necessary to introduce palliative care but were thwarted by organizational barriers.
CONCLUSIONS: The course was successful in building participants capacity to provide palliative care however; barriers made introduction of palliative care into the ICU difficult.
OBJECTIVE: This pilot study set out to evaluate the feasibility and efficacy of an interactive, peer-led, health engagement workshop to improve confidence and comprehension related to advance care planning (ACP) among young adults. Secondarily, this study evaluated if such workshops could promote ACP related behavior changes within this population.
METHODS: This observational cohort study utilized a repeated measures, mixed-method design. Six hour-long, in-person workshops were conducted with undergraduate students during meetings of university student organizations. Participants were evaluated across 3 mixed-method surveys, evaluating confidence, knowledge, and behaviors related to ACP prior to participation, directly after, and during a 2-week follow-up.
RESULTS: Workshop participation improved the average participant confidence and knowledge related to ACP as well as encouraged some participants to engage in discussions related to end-of-life care with friends and family. Alongside the impact of the workshops on knowledge and confidence, participants positively evaluated the design of the workshops through collected qualitative feedback.
CONCLUSION: These results are encouraging in assessing this population's willingness to learn about end-of-life care planning. The tools developed and the corresponding results should be used for further exploration of engaging the young adult population in ACP to promote improved healthcare outcomes.
Background: Palliative care is a patient-centred, integrated approach for improving quality of life for both patients facing life-threatening illnesses and for their families. Although there has been increased interest in palliative care for non-cancer patients, the palliative care competency of nurses who care for non-cancer patients has rarely been investigated. This study described the palliative care knowledge, attitude, confidence, and educational needs in nurses who care for patients with congestive heart failure, stroke, end-stage renal disease, and end-stage liver disease; explored the relationships between those variables; and identified factors affecting nurses’ palliative care confidence.
Methods: A cross-sectional, descriptive, correlational design was employed; data collection was conducted at a tertiary hospital in Seoul, Korea. Nurses who were working in general wards and intensive care units (N = 102) completed valid and reliable self-administered questionnaires. Descriptive statistics, frequencies, independent t-tests, one-way ANOVA, Pearson’s correlations, and multiple regression were conducted to analyse the data.
Results: Nurses’ palliative care knowledge level was low (9.73 ± 2.10; range = 0–20) and their attitude toward palliative care was moderate (87.97 ± 6.93, range: 30–120). Knowledge was significantly correlated with attitude (r = .29, p = .003). Nurses were highly confident in pain and symptom management but demonstrated high educational needs for managing human and material resources to provide palliative care. Previous training in hospice, palliative, and EOL care was a significant and modifiable factor that affected nurses’ confidence (std. ß = 0.25, p = .010).
Conclusions: To facilitate high-quality palliative care for non-cancer patients and families, nursing education programs should be developed to address nurses’ knowledge level, confidence level, and educational needs. This study provides relevant information that can be utilised to develop palliative care educational programs for nurses who care for non-cancer patients.
BACKGROUND: Assisted dying (AD) is currently of wide interest due to legislative change. Its relationship to other end-of-life practices such as palliative sedation (PS) is the subject of ongoing debate. The aim of this article is to describe the perspectives of a group of New Zealanders with life-limiting illness, who want or would consider AD, on the provision of end of life services, including assisted death, withdrawal of lifeprolonging treatment and symptom management with opioids or PS.
METHODS: We recruited 14 people with life-limiting illness and life expectancy of less than a year. Their mean age was 61 (range, 34-82) years and half were enrolled in Hospice. An additional six family members were also interviewed and included in analysis. We asked them about why they would consider AD if it was available. Interview transcripts were inductively analyzed consistent with thematic analysis. We compared the findings to prevailing ethical frameworks.
RESULTS: Most of the participants viewed current palliative care practices, such as pain relief with opioids and symptom management with PS, as hastening death, in contrast to some medical research which concludes that proportional therapeutic doses do not hasten death. Some participants did not agree with the 'doctrine of double effect' ('DDE') and saw such practices as 'slow euthanasia' and 'covert euthanasia'. They implied such practices were performed without patient consent, though they did not conceive of this as murder. Participants asserted that active and passive practices for ending life were morally equivalent, and preferred to choose the time of death over other legal means for death.
CONCLUSIONS: This article contributes to what is known about how patients perceive end-of-life practices that potentially hasten death. There is a divide in what medical ethics and most health professionals and what some patients consider active hastening death. Participants' perspective was consistent with a consequentialist framework whereas deontology often guides medical ethics at the end of life. Participants' challenge to the interpretation of legal end-of-life practices as AD represents an epistemic contest to the foundation of medical knowledge, authority and ethics and therefore carries implications for preferences in care, communication and palliative care practice.
Introduction: Palliative care is a multidisciplinary approach which is focused on both the patient and their family. Therefore the objectives of the study is to assess the knowledge and attitude towards palliative care and its associated factors among nurses in Tigray, Northern Ethiopia, 2018.
Methods: An institutional based cross-sectional quantitative study design was carried out using 355 nurses working in selected hospitals in Tigray region from February to March, 2018. Systematic random sampling was used to select six governmental hospitals. We used triangulation in the study method, making use of both Frommelt's Attitude Toward Care of the Dying (FATCOD) scale, and Palliative Care Quiz for Nursing (PCQN) knowledge. SPSS were applied for data entry and analysis. Statistical significance was declared at P<0.05. The goodness of fit the final logistic model was tested by using the Hosmer and Lemeshow test at a value of > 0.05.
Results: All the participants were able to respond. Out of the total study participants, 223 (62.8%) had good knowledge and 200 (56.3%) had a favorable attitude towards Palliative care. A medical ward had (AOR = 3.413, CI = 1.388-8.392, P = 0.019), trained Nurses [AOR = 3.488; CI = 1.735-7.015; P = 0.00) significant associated with nurses knowledge towards palliative care. Nurses working in the lemlem Karl (AOR=2.541; 95% CI; 0.013(1.106-5.835), nurses who had a 20-30 years ago had unfavorable attitude (AOR = 2.660; 95% CI; 0.002(1.386-5.106) were significant.
Conclusion: The nurses had poor knowledge. However, their attitude towards palliative care (PC) was favorable.
The purpose of this pilot was to identify the effects of a 4-credit interdisciplinary undergraduate course focused on communication strategies to enhance spiritual care at the end of life. The course provided students with opportunities to enhance their ability to communicate empathically with individuals facing the end of life. Evidence-based content focused on ways to live each day with hope and gratitude, strengthen relationships, create a legacy, and find meaning and purpose in life and death. Narayanasamy's (1999) Actioning Spirituality and Spiritual Care Education and Training in Nursing model guided project development. The study used a prospective, pretest/posttest design. Participants included undergraduate students (n = 34) from nursing, premedicine, athletic training, business, economics, and religious studies at a Midwest liberal arts college. Statistically significant differences were found in students' attitudes toward and knowledge of spirituality/spiritual care (P < .0001, Cohen's d = 0.59), spiritual care competence (P < .0001, Cohen's d = 0.79), and level of response empathy through role play (P < .0001, Cohen's d = 0.92). Many students referred to this course as “life changing” and “healing.” As our students go out into the community, they may intimately touch the lives and hearts of future patients, family, and friends who face the end of life with their compassionate words.
The objective of this study was to understand the organizational context of nurses' use of advance care plans (ACPs). We use a modified version of Bandera's social cognitive theory model to understand relationships between organizational constructs such as experience with ACPs and satisfaction with organizational support and oncology nurses' knowledge, behaviors, and perceptions around ACPs. The sample included practicing registered nurses with a major focus in oncology who were members of the Oncology Nursing Society in the United States, and nurses at medical hospital or community care settings were included. Institutional review board approval was obtained, and permission was granted from the oncology nursing organization for online surveys. A validated ACP survey was used to measure nurses' experiences and perceptions of working with ACP. Perceptions of ACP by patients, vicarious experience with ACP, direct experience of ACP, having received training, and perceptions of organizational support for ACP were all predictive of total ACP behaviors in the workplace. The final regression model had 3 independent variables and accounted for 33% of the variance in total ACP behaviors. Both vicarious and direct experience with ACP was associated with ACP behaviors in workplaces. This implies the need for more vicarious and direct training experiences, as well as organization support, to build self-efficacy to perform ACP.
Background: International research has shown that healthcare professionals (HCPs) and nonhealthcare professionals (NHCPs) are unaware of the goals and purposes of palliative care. This study evaluates the knowledge of palliative care among a sample of Portuguese adults and correlates their level of knowledge with age, gender, profession, and experience of family member's palliative care.
Method: A cross-sectional online survey was carried out on a sample of 152 HCPs and 440 NHCPs who completed an anonymous questionnaire of sociodemographic, family, and professional data, and an instrument of 26 dichotomous (true or false) questions focusing on palliative care goals and purposes.
Results: The 592 participants had a mean age of 31.3 ± 11.1 years, and most were female. Statistically significant differences between statements considered as correct by HCPs and NHCPs were found in 24 statements; HCPs had the highest percentage of correct answers. The terms most frequently associated with palliative care mentioned by NHCPs were chronic and progressive disease (n = 76), while HCPs mostly mentioned quality-of-life promotion (n = 29). Women, the elderly, and HCPs had a higher level of knowledge regarding palliative care (p < 0.001).
Conclusions: Results clearly show gaps in knowledge of palliative care, especially among NHCPs. An integrated approach is needed to inform and clarify the philosophy and goals of palliative care in different settings in order to improve knowledge.
CONTEXT: Palliative radiotherapy is effective in the management of symptoms resulting from advanced cancer. However, it remains underutilised. In developed countries, many factors have been linked to this phenomenon but data in developing and low income countries, particularly in Latin America, are lacking.
OBJECTIVES: To conduct a cross-sectional survey to explore palliative care physicians' knowledge of palliative radiotherapy and to investigate possible factors that limit patient referral.
METHODS: Cross-sectional survey. An online questionnaire was sent to palliative care physicians (n=170) registered in the Chilean Medical Society's directory of Palliative Care.
RESULTS: The overall response rate was 58.8%. Nearly all respondents (98%) considered radiotherapy to be a useful treatment. Less than half the respondents (43%) had good knowledge of palliative radiotherapy. Knowledge was correlated with self-reported knowledge (p=0.015), discussing cases with radiation oncology (p=0.001) and having attended educational events on palliative radiotherapy (p=0.001). Patient reluctance, poor performance status and family reluctance were identified as major barriers to the use of palliative radiotherapy. Physicians from cities other than the capital were more likely to be concerned about barriers such as distance to radiotherapy facilities (p=0.01), the duration of the referral process (p=0.01) and the lack of a radiation oncologist available for discussing cases (p=0.01).
CONCLUSIONS: Several barriers affect referral to palliative radiotherapy. Some barriers seem to be more significant for physicians practicing in cities far from cancer centres. Physicians` knowledge is less than optimal and has been identified as a barrier to referral. Educational interventions and broadening the availability of cancer treatment resources are needed in order to improve the referral process.
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.
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.