Background: The prognosis of an aggressive lymphoma can change dramatically following failure of first-line treatment. This sudden shift is challenging for the promotion of illness understanding and advance care planning (ACP). Yet, little is known about illness understanding and ACP in patients with aggressive lymphomas.
Objective: To examine illness understanding, rates of engagement in ACP, and reasons for lack of ACP engagement in patients with advanced B cell lymphomas.
Design: Cross-sectional observational study.
Setting/Subjects: Patients (n = 27) with aggressive B cell lymphomas that relapsed after first- or second-line treatment treated at a single urban academic medical center.
Measurements: Participants were administered structured surveys by trained staff to obtain self-report measures of illness understanding (i.e., aggressiveness, terminality, curability) and ACP (i.e., discussions of care preferences, completion of advance directives).
Results: The majority of patients reported discussing curability (92.6%), prognosis (77.8%), and treatment goals (88.9%) with their medical team. Yet, less than one-third of patients reported being terminally ill (29.6%) and having incurable disease (22.2%). Most patients had a health care proxy (81.5%) and had decided about do-not-resuscitate status (63%), but the majority had not completed a living will (65.4%) or discussed their care preferences with others (55.6%).
Conclusions: The accuracy of lymphoma patients' illness understanding following first-line treatment is difficult to determine due to the potential for cure following transplant. However, this study suggests that a large proportion of patients with advanced B cell lymphomas may underestimate the severity of their illness, despite discussing illness severity with their medical team. Providing patients with information on prognosis, and the ACP process may increase engagement in ACP.
Background: In 2014, the province of Alberta launched a campaign to promote public awareness of advance care planning (ACP) and its associated two-part documentation-a Goals of care designation (GCD, a medical order written by a health care practitioner detailing wishes for care) and a personal directive (PD, a document naming a surrogate decision maker). Notably, unlike the GCD, the PD can be self-initiated independent of a health practitioner.
Objective: Two years after the campaign, we aimed to assess knowledge and recall of participation in ACP among cirrhosis patients.
Design/Setting: Consecutive adult cirrhosis patients attending one of two specialty cirrhosis clinics in Edmonton, Alberta, were surveyed.
Results: Ninety-seven patients were included. Mean model for end-stage liver disease was 12. Although 97% of patients indicated it was extremely important to know the reality of their illness, only 53% understood that cirrhosis would affect their future quality of life. Thirty-three percent of patients had completed a PD and 14% had completed a GCD. Seventy-eight percent of patients believed a GCD was important to them and 85% preferred to complete it in an outpatient clinic setting. Only a minority of patients who had taken the initiative to complete a PD in the community also had a GCD.
Conclusions: Despite efforts to raise awareness of and educate Albertans about ACP, <20% of cirrhosis patients have a completed GCD. Additional strategic prioritization is required in both patients and providers to ensure that health practitioner-facilitated ACP is carried out as standard-of-care in all patients with cirrhosis.
BACKGROUND: The palliative care consultation service (PCCS) of the National Health Insurance payments has been promoted in Taiwan since 2011, although few studies have been conducted on healthcare staffs' knowledge, attitudes, and practices regarding PCCS in Taiwan; consequently, the main objective of this study was to explore any correlations regarding the above by cross-sectional design using convenience sampling.
METHODS: A total of 210 healthcare staff members were enrolled from a regional hospital from June 1, 2018, to September 30, 2018. Questionnaire items on the Palliative Care Consultation Service Inventory (KAP-PCCSI) were used to measure healthcare staff's knowledge, attitudes, and practices of PCCS. The collected data were analyzed by using descriptive statistics, independent samples t-test, Pearson's correlation coefficient analysis, and multiple linear regression analysis.
RESULTS: The results revealed that the mean scores for knowledge of and attitudes of KAP-PCCSI were 58.7 ± 8.9 (perfect score: 75) and 42.7 ± 4.7 (perfect score: 50) respectively, while the mean score for practices of KAP-PCCSI was 36.3 ± 8.1 (perfect score: 50); moreover, the healthcare staff's knowledge and attitudes were positively correlated with their practices (p < 0.01). The results also showed that knowledge, attitudes, experience of having a family member(s) or friend(s) passing away, and being a medical personnel constituted the major predictors of practices (p < 0.001). These factors explained 43.2% of the overall variance for practices of KAP-PCCSI.
CONCLUSIONS: The findings can help healthcare staff understand factors influencing practices of KAP-PCCSI and can serve as a reference for the development of strategies for palliative care education and training while improving the care quality of patients undergoing such palliative care with terminal life considerations in the hospitals, thereby fulfilling the goal of achieving holistic care.
BACKGROUND: palliative radiotherapy can improve quality of life for patients who are symptomatic of advanced cancers. However, this treatment modality is underused and is often mistimed, which negates its potential benefit.
AIM: the aim of this study was to assess nursing knowledge of palliative radiotherapy in the context of caring for patients with a cancer diagnosis.
METHODS: a quantitative method of research was employed using a questionnaire to assess palliative radiotherapy knowledge among a purposive sample of 162 oncology and palliative care nurses.
FINDINGS: the response rate was 48.14%. More than half of respondents reported their knowledge of radiotherapy as insufficient for their practice and almost all agreed they would benefit from more education.
CONCLUSION: nurses require more training to identify when palliative radiotherapy would be an effective symptom control option; specific areas of focus for developing future radiotherapy educational programmes are highlighted.
BACKGROUND: The need for palliative care in the intensive care unit is increasing. Whether gaps and variations in palliative care education and use are associated with moral distress among critical care nurses is unknown.
OBJECTIVES: To examine critical care nurses' perceived knowledge of palliative care, their recent experiences of moral distress, and possible relationships between these variables.
METHODS: In this quantitative, descriptive study, survey questionnaires were distributed to 517 critical care nurses across 7 intensive care units at an academic health center in Virginia. Validated instruments were used to measure participants' perceptions of palliative care in their practice setting and their recent experiences of moral distress.
RESULTS: A total of 167 completed questionnaires were analyzed. Fewer than 40% of respondents reported being highly competent in any palliative care domain. Most respondents had little palliative care education, with 38% reporting none in the past 2 years. Most respondents reported moral distress during the study period, and moral distress levels differed significantly on the basis of perceived use of palliative care (P = .03). Respondents who perceived less frequent use of palliative care tended to experience higher levels of moral distress.
CONCLUSIONS: Many critical care nurses do not feel prepared to provide palliative care. When palliative care access is perceived as inadequate, nurses may be more apt to experience moral distress. Health system leaders should prioritize palliative care training for critical care nurses and their colleagues and empower them to reduce barriers to palliative care.
Background: As patients' accurate understanding of their prognosis is essential for informed end-of-life planning, identifying associated factors is important.
Objective: We examine if receiving palliative chemotherapy or radiation, and the perception of those treatments as curative or noncurative, is associated with prognostic understanding.
Design: Cross-sectional analyses from a multisite, observational study.
Setting/Subjects: Patients with advanced cancers refractory to at least one chemotherapy regimen (N = 334).
Measurements: In structured interviews, patients reported whether they were receiving chemotherapy or radiation, and whether its intent was curative or not. Their responses were categorized into three groups: patients not receiving chemotherapy/radiation (no cancer treatment group); patients receiving chemotherapy/radiation and misperceiving it as curative (treatment misperception group); and patients receiving chemotherapy/radiation and accurately perceiving it as noncurative (accurate treatment perception group). Patients also reported on various aspects of their prognostic understanding (e.g., life expectancy).
Results: Eighty-six percent of the sample was receiving chemotherapy or radiation; of those, 16.7% reported the purpose of treatment to be curative. The no-treatment group had higher prognostic understanding scores compared with the treatment misperception group (adjusted odds ratio [AOR] = 5.00, p < 0.001). However, the accurate treatment perception group had the highest prognostic understanding scores in comparison to the no-treatment group (AOR = 2.04, p < 0.05) and the treatment misperception group (AOR = 10.19, p < 0.001).
Conclusions: Depending on patient perceptions of curative intent, receipt of palliative chemotherapy or radiation is associated with better or worse prognostic understanding. Research should examine if enhancing patients' understanding of treatment intent can improve accurate prognostic expectations.
OBJECTIVE: Despite its established benefits, palliative care (PC) is not well known among patients and family/caregivers. From a nationally representative survey, we sought to assess the following associated with PC: knowledge, knowledge sources, and beliefs.
METHODS: Data were drawn from the Health Information National Trends Study (HINTS 5 Cycle 2), a cross-sectional, survey of non-institutionalized adults aged 18+ years in the USA. Data were weighted and assessed by proportional comparison and multivariable logistic regression.
RESULTS: A total of 3504 respondents were identified, and approximately 29% knew about PC. In the adjusted model, less PC knowledge was associated with: lower age (those aged <50), male gender, lower education (
SIGNIFICANCE OF RESULTS: PC knowledge was generally low (1-in-3 respondents knew of PC), with significant differences according to age, gender, education, and internet use. These data provide a baseline from which PC education policies and interventions may be measured.
This study examines the experiences and beliefs of university students which affect attitudes toward palliative care. A total of 322 students responded to a survey on palliative care and end-of-life attitudes. Almost 40% of the students reported not having enough knowledge about options at the end of life. Results of multiple regression indicate students who have more negative attitudes toward palliative care did not believe in end-of-life care planning. Female students and those who had a family member or friend who used palliative care had more positive attitudes toward palliative care. Understanding student perceptions of palliative care allows for developing curriculum sensitive to learners' needs and addressing misconceptions.
OBJECTIVES: How advance care planning (ACP) is conceptualised in Australia including when, where and how ACP is best initiated, is unclear. It has been suggested that healthcare delivered in general practice provides an optimal setting for initiation of ACP discussions but uptake remains low. This systematic review and critical interpretive synthesis sought to answer two questions: (1) What are the barriers and enablers to uptake of ACP in general practice? (2) What initiatives have been used to increase uptake of ACP in general practice?
DESIGN: A systematic review and critical interpretive synthesis of the peer-reviewed literature was undertaken. A socioecological framework was used to interpret and map the literature across four contextual levels of influence including individual, interpersonal, provider and system levels within a general practice setting.
SETTING: Primary care general practice settings DATA SOURCES: Searches were undertaken from inception to July 2019 across Ovid Medline, Cumulative Index to Nursing and Allied Health Literature, Scopus, ProQuest and Cochrane Library of systematic reviews.
RESULTS: The search yielded 4883 non-duplicate studies which were reduced to 54 studies for synthesis. Year of publication ranged from 1991 to 2019 and represented research from nine countries. Review findings identified a diverse and disaggregated body of ACP literature describing barriers and enablers to ACP in general practice, and interventions testing single or multiple mechanisms to improve ACP generally without explicit consideration for level of influence. There was a lack of cohesive guidance in shaping effective ACP interventions and some early indications of structured approaches emerging.
CONCLUSION: Findings from this review present an opportunity to strategically apply the ACP research evidence across targeted levels of influence, and with an understanding of mediators and moderators to inform the design of new and enhanced ACP models of care in general practice.
PROSPERO REGISTRATION NUMBER: CRD42018088838.
Context: Palliative care is underutilized, and research has neglected patient-level factors including attitudes that could contribute to avoidance or acceptance of palliative care referrals. This may be due in part to a lack of existing measures for this purpose.
Objectives: To develop and validate a 9-item scale measuring patient attitudes toward palliative care, comprised of 3 subscales spanning emotional, cognitive, and behavioral factors.
Methods: Data were collected online in three separate waves, targeting individuals with cancer (Sample 1: N=633; Sample 2: N=462) or non-cancer serious illnesses (Sample 3: N=225). Participants were recruited using ResearchMatch.org and postings on the websites, social media pages, and listservs of international health organizations.
Results: Internal consistency was acceptable for the total scale (a=.84) and subscales: emotional (a=.84), cognitive (as=.70), and behavioral (a=.90). The PCAS-9 was significantly associated with a separate measure of palliative care attitudes (ps<.001) and a measure of palliative care knowledge (ps<.004), supporting its construct validity in samples of cancer and non-cancer serious illnesses. The scale’s psychometric properties, including internal consistency and factor structure, generalized across patient subgroups based on diagnosis, other health characteristics, and demographics.
Conclusion: Findings support the overall reliability, validity, and generalizability of the PCAS-9 in serious illness samples and have implications for increasing palliative care utilization via clinical care and future research efforts.
Background: The World Health Organization estimates that around 6 million people need palliative care in India but not even 1% of the patients have access to it.
Objective: To find the prevalence of knowledge on palliative care and compare the effectiveness of different methods of health education on attitude regarding palliative care among urban college students in southern India.
Subjects: A pre-post intervention study was conducted in three different arts, science and commerce colleges in urban Pondicherry in August 2017.
Methods: Data regarding attitude change towards palliative care by three different modes of intervention in the three colleges: health talk (Group A), health talk with video (Group B) and health talk and interaction with a patient's caregiver (Group C) - before and after intervention - were collected using a predesigned pretested structured questionnaire.
Results: Among the 65, 75 and 67 participants in Groups A, B and C, respectively - the majority belonged to urban nuclear families; the mean age was 19.5 (0.9) years and Group C had only female students. The prevalence of knowledge about palliative care was found to be 9.2%. There was a difference in attitude scores among the three groups (p = 0.02) with Group C having the highest change of a score with a median of 2 (-1,5). Conclusion: Awareness about palliative care is very low among non-medical undergraduate college students of urban Pondicherry. The best method of health education in changing the attitude towards palliative care was interaction with patient's caregiver.
Although the process of dying is a universal human experience, it often magnifies individuals’ unique cultural differences. Persons experiencing homelessness (PEHs) have unique barriers, challenges, and wishes for end-of-life care. There is insufficient evidence about how to provide culturally congruent advance care planning (ACP) through advance directive (AD) completion for PEHs. This study addressed this knowledge gap, and its findings serve as the basis for developing additional strategies to promote a satisfying ACP experience for this population when they complete an AD. The purpose of this study was to discover if an AD form recreated for PEHs would positively affect their completion of the AD as well as their overall experience with ACP. Guided by the culture care theory and qualitative ethnonursing methodology, 38 individuals (30 PEHs and 8 student nurses) were interviewed. Data were analyzed using the 4 phases of ethnonursing analysis. The 3 themes abstracted were (1) “it needs to be done,” (2) the presence or absence of trusted family support, and (3) ACP for PEHs is facilitated by an AD workshop. Nursing interventions based on study findings can be used to help promote a dignified, meaningful ACP experience for vulnerable populations.
During recent years, arguments supporting and opposing the legalisation of assisted dying have greatly intensified. The issue is a matter for society to decide, but physicians and psychiatrists have an essential role in informing public and parliamentary opinion on the contributions and limitations of medical knowledge related to the assessment of patients who request assisted dying and the necessity for strict safeguards should it be legalised. Some of the more important aspects of assessment and safeguards are discussed in this paper.
Caring for patients who are at the end of their lives is an essential aspect of practice in intensive care units (ICUs). While intensive care is one of the fastest-growing healthcare specialties as a result of technological and scientific advances, a significant proportion of patients admitted to an ICU in the UK will not survive their ICU stay. Therefore, it is important to examine ways to enhance practice in this area and the factors that might affect the care provided to patients and their families.
AIM: To identify the challenges and facilitators that members of the ICU multidisciplinary team encounter in the delivery of end of life care to dying patients in ICUs.
METHOD: A scoping literature review was undertaken. Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus with full text, MEDLINE Complete and the EBSCOhost E-Journals Database were searched electronically to identify literature from April 2007 to April 2017, alongside hand-searching. Critical appraisal tools were used and thematic analysis was undertaken to analyse the data and identify themes.
FINDINGS: Ten articles were included in the literature review, which identified various challenges and facilitators in providing effective end of life care in ICUs. The main themes identified were: communication, family involvement, personal factors and the ICU environment.
CONCLUSION: All of the studies included in the literature review identified several important challenges related to communication, such as time constraints, disagreements among healthcare professionals, and a lack of knowledge among healthcare professionals about how to conduct challenging conversations with patients and families. Future developments in practice should consider the role of effective multidisciplinary team-working in end of life care.
CONTEXT: Advanced cancer patients have unrecognized gaps in their understanding about palliative radiation therapy (PRT).
OBJECTIVES: To build a video decision aid for hospitalized patients with advanced cancer referred for PRT and prospectively test its efficacy in reducing decisional uncertainty, improving knowledge, increasing treatment readiness and readiness for palliative care consultation, and its acceptability among patients.
METHODS: Forty patients with advanced cancer hospitalized at Memorial Sloan Kettering Cancer Center watched a video decision aid about PRT and palliative care. Patients' conceptual and logistical knowledge of PRT, decisional uncertainty, treatment readiness, and readiness for palliative care consultation were assessed before and after watching the video with a 6-item knowledge survey, the decisional uncertainty subscale of the Decisional Conflict Scale, and Likert instruments to assess readiness to accept radiation treatment and/or palliative care consultation, respectively. A post-video survey assessed the video's acceptability among patients.
RESULTS: After watching the video, decisional uncertainty was reduced (28.3 vs. 21.7, p=0.02); knowledge of PRT improved (60.4 vs. 88.3, p<0.001); and PRT readiness increased (2.0 vs. 1.3, p=0.04). Readiness for palliative care consultation was unchanged (p=0.58). Patients felt very comfortable (70%) watching the video and would highly recommend it (75%) to others.
CONCLUSION: Among hospitalized patients with advanced cancer, a video decision aid reduced decisional uncertainty, improved knowledge of PRT, increased readiness for PRT, and was well-received by patient viewers.
OBJECTIVES: In Singapore, the core curriculum for end-of-life (EOL) care used in nurse training courses is limited. Only 45% of nurses indicated familiarity with inpatient palliative care. Nurses who lack skills in palliative care may develop anxiety and negative attitudes towards caring for dying patients. We explored whether a two-day, multimodal EOL care workshop could reduce nurses' death anxiety and improve nurses' skills, knowledge, and attitude towards palliative care.
METHODS: Forty-five nurses participated in the workshop. At baseline before and at six weeks after, a 20-item knowledge-based questionnaire and the Death Attitude Profile-Revised (DAP-R) were administered. Six weeks post-workshop, in-depth interviews were conducted. We employed descriptive statistics, student paired samples t-test and inductive thematic analysis.
RESULTS: There was a significant improvement in nurses' knowledge score (p < 0.01) and reduction in their death anxiety score (p < 0.01). Fear of Death (p = 0.025) and Death Avoidance (p = 0.047) sub-scores decreased significantly. However, the remaining domains such as Neutral Acceptance, Approach Acceptance, and Escape Acceptance did not show any significant difference, although Escape Acceptance showed a trend towards a reduced score (p = 0.063). After the workshop, more nurses adopted the Neutral Acceptance stance (76.2%), and none of them fell into the Fear of Death subdomain. Most nurses interviewed reported a positive change in their knowledge, attitudes, and practice even after the workshop.
SIGNIFICANCE OF RESULTS: The multimodal palliative care workshop was useful in improving nurses' EOL knowledge and reducing their anxiety towards death. The positive change in nurses' attitudes and practices were noted to be sustained for at least six weeks after the intervention.
It is recommended that advance care planning take place across the lifespan. Rural populations have a heightened risk for poor quality and high cost of end-of-life care. A doctoral project was completed to assess rural nurses’ knowledge, attitudes, and experiences with advance directives using the Knowledge, Attitudinal, and Experimental Surveys on Advance Directives. Descriptive statistics were used for analysis. Participants were nurses who practice in rural settings (N = 22). The average age was 46.4 years; all were white (n = 22), and the majority were baccalaureate prepared (n = 12). Practice settings were primarily in home care and hospice. Knowledge scores on advance directives were low (57%). Nurses felt confident in counseling and initiating discussions with patients and families. Less than one-half of the nurses reported they feel part of the advance care planning team. The majority reported advance directive resources and mentorship of younger nurses would be beneficial and indicated the need for additional education, training, knowledge, time, and support to better assist with advance care planning. Project results and recommendations were presented to the participating health care organization. Recommendations included workplace education, support, mentorship, resources, and education on cultural sensitivity using the rural nursing theory.
Palliative care in oncology is an interdisciplinary approach, centered on patients and their families, carried out along the course of neoplastic diseases, based on symptom control, assertive communication and shared decision-making. Although clinical guidelines recommend a holistic intervention, early integration of palliative care into traditional oncological treatment, research shows a great delay in referral of patients, restricting palliative care to end-of-life care. Why does there seem to be a rationing of the early referral, sometimes in violation of human dignity? To a large extent it has to do with lack of knowledge, training and education of health professionals about palliative care and the techniques to deal with the process of death and dying. Several studies have demonstrated the benefit of integrating palliative actions into the routine of active cancer treatments, not only in terms of effective control of physical and psychological symptoms, but also in terms of overall quality of life, patient and family satisfaction, health care costs and survival in some cases. It is necessary to take measures that encourage oncologists to obtain further training in palliative care, as a formal, compulsory internship, integrated in their specific training program. This way, a new generation of physicians will surely change the lives of cancer patients, and their families, integrating - without disproportionate rationing - oncology and palliative medicine.
This study developed an end-of-life (EOL) care nursing knowledge scale for Japanese geriatric nurses (ELNKS-JG) to measure nurse knowledge of EOL care for older adults. It also was used to evaluate the quality of The End-of-Life Nursing Education Consortium–Japan Geriatric. Participants were 1168 nurses employed in 32 institutions across Japan. The items of our measure were developed to cover 8 important topics: principles of EOL care for older adults; pain management; symptom management; ethics of care; cultural and spiritual considerations; communication; loss, grief, and bereavement; and caring for final days. The measure included 51 items with an overall Cronbach a coefficient of 0.87 and an intraclass correlation coefficient of 0.81. Our measure, the ELNKS-JG, was confirmed to have good internal consistency, test-retest reliability, content validity, and known-groups validity. This scale’s items included knowledge about noncancerous diseases, physical changes due to aging, family care, and multidisciplinary collaboration. The ELNKS-JG comprehensively measures a nurse’s knowledge of EOL care for older adults in any EOL setting. Furthermore, this scale can evaluate educational programs aimed at improving care quality and encouraging related activities in facilities that provide EOL care.
Background: Patients with heart failure (HF) have not been considered as major beneficiaries of advance directives (ADs). We analyzed factors affecting the preferences for the adoption of ADs by patients with HF and their caregivers.
Methods and Results: Seventy-one patient (mean age: 68 years)–caregiver (mean age: 55 years) dyads were enrolled during clinic visits for routine care at a single institution and completed questionnaires during in-person visits. Cohen's kappa coefficients and generalized estimating equation models were used to analyze the data. The agreement on dyadic perspectives for aggressive treatments was poor or fair, whereas agreement relative to hospice care was moderate (k = 0.42, 95% confidence interval = 0.087–0.754). Both patients and caregivers demonstrated poor knowledge of ADs and similar levels of perceived benefits and barriers to advance care planning. However, the caregivers had more positive attitudes toward ADs than patients. Patients and caregivers who were older and/or males had greater odds of preferring aggressive treatments and/or hospice care. Further, those with depressive symptoms had lower odds of preferring hospice care.
Conclusion: The dyadic agreement was moderately high only for hospice care preferences. Both patients and caregivers demonstrated knowledge of shortfalls regarding ADs. Timely AD discussions could increase dyadic agreement and enhance informed and shared decision-making regarding medical care.