Palliative care is one of the newer health specialties and continues to mature. While there has been remarkable progression of clinical skills and education, there has been a lack of focus on palliative care interdisciplinary leadership or development of leadership skills. This article highlights the importance of interdisciplinary palliative leadership within the 5 realms of clinical practice, research, education, policy/advocacy, and administration. A definition of leadership is offered and discussion of successful leadership skills is described. A curent review of leadership opportunities is provided.
This book, written as a PhD dissertation, explores palliative care volunteering in the Flemish healthcare system through quantitative and qualitative studies from the perspective of health services, volunteers, patients, family caregivers and healthcare professionals.
[Extrait résumé éditeur]
BACKGROUND: Volunteers are expected to play a key role in children's hospice. However, there is a lack of information about how to cultivate effective volunteer training programs.
OBJECTIVE: To verify the effect of a training program on volunteers' confidence in providing learning support and sharing experiences with children with life-threatening conditions and their families in a children's hospice.
METHODS: In this pre-post study, participants were 48 undergraduate and graduate students from 3 universities in Japan. They received 5 lectures on children's hospice learning support. They evaluated the training program by rating their self-confidence in meeting each of the 15 program goals on a questionnaire.
RESULTS: An exploratory factor analysis of the questionnaire yielded 12 goals in 4 factors: understanding of one's own and others' mental state, accommodating the learning needs of children with life-threatening conditions, understanding and accommodating the physical state of children with life-threatening conditions, and understanding the significance of children's hospice. A paired t test revealed that participants' self-confidence had increased significantly in 3 of these 4 factors after the program. However, the score for accommodating the learning needs of children with life-threatening conditions decreased but not significantly.
CONCLUSION: Although it needs some improvements, the program was effective for improving volunteers' self-confidence in and understanding of learning support and sharing experiences with children with life-threatening conditions.
OBJECTIVES: Having early discussions with seriously ill patients about their priorities and values can improve their peace of mind and family outcomes during bereavement; however, physicians and medical students report feeling underprepared to hold serious illness conversations. We evaluated the impact of the Serious Illness Care Program clinician training workshop on medical learners' knowledge of comfort and confidence in holding such conversations.
METHODS: Eligible learners were penultimate- or final-year medical students or first-year residents of generalist programs (Family Medicine, Internal Medicine). Learners participated in a 2.5-hour workshop involving reflection on serious illness discussions, didactic teaching and demonstration of the Serious Illness Conversation Guide (SICG), role play with standardized patients, direct observation, and feedback from experts. Participants completed pre- and post-intervention questionnaires with Likert-type scale and open-ended questions, which were analyzed using paired t tests and qualitative content analysis, respectively.
RESULTS: We enrolled 25 learners. The intervention was associated with an increase in knowledge (P < .001) and self-efficacy (P < .001). All learners reported gaining new skills, with a majority specifically identifying a framework for structuring serious illness conversations in the qualitative analysis (n = 14, 56%). Participants stated the workshops would improve their comfort in holding serious illness conversations (n = 24, 96%), and that it would be valuable to integrate the workshops into their formal curricula (n = 23, 92%).
CONCLUSIONS: Training on the use of the SICG is novel for medical students and first-year residents and associated with the improvement in their knowledge of and perceived capacity to hold serious illness conversations. This study suggests that the integration of SICG training into medical curricula may have educational value.
Background: The lack of consumer knowledge and misconception of services could impede requests for and acceptance of palliative care. YouTube has been widely used for health information dissemination.
Objective: To explore the availability and characteristics of palliative care educational videos on YouTube and determine how palliative care is portrayed in these videos.
Methods: Keyword search and snowball methods were used to identify palliative care videos on YouTube. A structured data collection protocol was developed to record characteristics of a video. Descriptive analysis was used to describe the video features; logistic regression was conducted to determine the association between video characteristics and number of views per day.
Results: A total of 833 videos were screened; 84 met criteria for analysis. The most prominent video styles were providing palliative care information (85%) and personal testimony (50%). One-third were uploaded by hospice/palliative care services or medical organizations, while another one-third by advocacy organizations. More than two-thirds mentioned “end-of-life” and 35% mentioned “hospice.” Physicians most frequently appeared and served as protagonists. Protagonists were primarily female (71.0%), aged 18–64 years (81.7%), and white (90.3%). Compared with videos uploaded by health care agencies, those uploaded by advocacy organizations had 6.41 times higher odds of having more than one view per day (p = 0.002).
Conclusion: Online videos may not provide accurate and appropriate information on palliative care. There is minimal ethnic diversity in terms of physician and family representation. More research is needed to determine the effectiveness of these videos in improving consumer knowledge of palliative care.
Nurses play an integral role in high-quality patient care. Thus, their skills in providing end-of-life care should be assessed and continually enhanced. Education intended to improve end-of-life skills must address the affective/emotional component of nursing care. Evidence demonstrates that emotional engagement and resilience among health care providers are correlated with improved quality outcomes and, conversely, that burnout and stress negatively affect patient safety. Addressing the emotional needs of health care providers is critical to improving quality throughout the health care system. An evidence-based workshop was implemented among direct care staff on a hospital-based palliative care unit, with the goal of fostering emotional engagement to improve staff perceptions and attitudes about caring for patients at or near the end of life. Although perceptions about quality of death were not affected by this intervention, there was a significant improvement in attitudes about end-of-life nursing care. Qualitative feedback also reflected appreciation for small group discussions and opportunities to debrief with peers away from the unit. This intervention reflected the value of emotional engagement in educational efforts to improve end-of-life nursing care.
Cet ouvrage réunit l'intégrallité du programme, les recommandations et les cours officiels, des données de la banque nationle d'entraînement Sides ainsi que les informations indispensables à connaître pour se préparer aux ECNi (Epreuves Classantes Nationales informatisées).
BACKGROUND: The clinical component of medical education for students and resident doctors in Japan occurs almost entirely in the hospital setting. Because of this inpatient focus, graduate medical education clinical training often fails to expose physicians-in-training to the challenges that patients may face in the outpatient or home setting. This is a descriptive study in which we explore what participating students and resident doctors learned through our brief home-based teaching experience.
METHODS: From June 2016 to December 2017, attending physicians on the internal medicine service had medical students and resident doctors accompany them on home care visits. Participants were selected by convenience sampling based on their rotation availability. After the home visit and the interactive discussion, the participants were expected to prepare a reflective journal on their experience and learning. Thematic analysis was applied, and key themes were developed based on Kolb's ELT (Experiential learning theory). Three months after completion of the experience, semi-structured interviews were individually conducted assessing participants' self-perceived changes.
RESULTS: Thirty-two medical students(10) or residents(22)participated in a home visit. Thirty of these learners were able to complete a reflective journal. Using thematic analysis, we identified 2 domains and 6 key themes from the participants' perceptions. Participants recognized the importance of patient-centered care, inter-professional collaboration of the home care team, and reconceptualized the meaning of medical practice and their professional identity as a doctor. Three month post-experience interviews were completed on 12 of the original 30 participants who completed the reflective journal. 2 domains and 6 key themes from the residents' experiences and perceptions were generated. The participants reported an increased attention to the daily lives and social situations of their hospitalized patients, and an extension of their focus beyond the clinical medical treatment of the patient.
CONCLUSION: The experience of a brief visit to a patient's home is a novel educational approach that may potentially provide medical students and resident doctors with opportunities to learn about out-of-hospital, patient-centered, home-based medical care.
Objective: Neurosurgeons care for critically ill patients near the end of life, yet little is known about how well their training prepares them for this role. We surveyed a random sample of neurosurgery residents to describe the quantity and quality of teaching activities related to serious illness communication and palliative care, and resident attitudes and perceived preparedness to care for seriously ill patients.
Methods: A previously validated survey instrument was adapted to reflect required communication and palliative care competencies in the 2015 the Accreditation Council for Graduate Medical Education (ACGME) Milestones for Neurological Surgery. The survey was reviewed for content validity by independent faculty neurosurgeons, piloted with graduating neurosurgical residents, and distributed online in August 2016 to neurosurgery residents in the United States using the American Association of Neurological Surgeons (AANS)/Congress of Neurological Surgeons (CNS) Joint Section on Neurotrauma and Critical Care email listserv. Multiple choice and Likert scale responses were analyzed using descriptive statistics.
Results: Sixty-two responses were recorded between August 2016 and October 2016. Most respondents reported no explicit teaching on: explaining risks and benefits of intubation and ventilation (69%), formulating prognoses in neurocritical care (60%), or leading family meetings (69%). Compared to performing craniotomies, respondents had less frequent practice leading discussions about withdrawing life-sustaining treatment (61% vs. 90%, p < 0.01, "weekly or more frequently"), and were less often observed (18% vs. 87%, p < 0.01) and given feedback on their performance (11% vs. 58%, p < 0.01). Nearly all respondents (95%) felt "prepared to discuss withdrawing life-sustaining treatments," however half (48%) reported they "would benefit from more communication training during residency." Most (87%) reported moral distress, agreeing that they "participated in operations and worried whether surgery aligned with patient goals."
Conclusions: Residents in our sample reported limited formal training, and relatively less observation and feedback, on required ACGME competencies in palliative care and communication. Most reported preparedness in this domain, but many were receptive to more training. Better quality and more consistent palliative care education in neurosurgery residency could improve competency and help ensure that neurosurgical care aligns with patient goals.
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
Context: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation.
Objectives: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics.
Methods: Funded through a US$1.6 million National Institutes of Health / National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children.
Results: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. Additionally, a one-day Professional Development Workshop (PDW) was developed to teach EPEC-Pediatrics graduates to teach future "Trainers," thus becoming "Master Facilitators". Between 2012-May 2019 a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three PDWs. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish.
Participants: overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Participants subsequently anticipated improvements in patient care for children with serious illness at their home institutions.
Conclusion: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
Objective: To determine if pharmacy students participating in simulation-based scenarios reported fewer learning needs about the transition from acute to end-of-life (EOL) care compared to students participating in solely case-based scenario delivery.
Methods: Four end-of-life cases were developed for both paper-based case study and simulation delivery. Pharmacy students on three distant campuses were exposed to the case study approach while four teams of nine to ten pharmacy students were exposed to simulated versions of the same cases. A validated questionnaire was administered before and after exposure to assess end-of-life care learning needs. Results were analyzed following a Bonferroni-adjustment for multiple testing.
Results: The case study groups produced similar pre/post changes on the questionnaire. After results were pooled and compared to the simulation only group, significantly higher changes in pre/post scores were found for the simulation group.
Conclusion: Pharmacy students exposed to simulated EOL scenarios experienced significantly reduced learning needs following the scenarios, unlike their classroom-based counterparts.
Introduction: To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs.
METHODS: We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved.
RESULTS: Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer.
CONCLUSIONS: RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure.
The purpose of this article is to explain the strategies used in the "Set-up" phase of developing computer-based education on the care and management of incarcerated people who are older and/or dying. Public health nurses have an opportunity to support efforts in educating corrections staff to enhance health care for older and dying inmates. Such endeavors can promote social justice through inmates receiving evidence-based care that parallels that received by the community at large. "Set-up" is the first of four phases in the Institute for Healthcare Improvement's Framework for Going to Full Scale. Our design approach was threefold and included an environmental scan, a modified Delphi survey, and a usability study. An expert advisory board was consulted throughout the Set-up Phase. Participants for the Delphi Survey had expertise in geriatrics and corrections health care. Usability testing was conducted at two State Correctional Institutions. The Delphi Survey consisted of three Qualtrics surveys. Usability testing examined navigability; detected problems; observed time spent solving problems; identified problem severity; and developed recovery strategies. The Set-up established proof of concept, three prototype modules, and a specifications document to guide future programming. In addition, a Technology Niche Analyses® provided a preliminary commercialization plan (NIH, 2017). The Set-up phase has been instrumental in exposing the available infrastructure for dissemination of an educational product within corrections and may be a first step in addressing public health concerns on issues in aging. Commercial feasibility of the program and the need for continued research for Developing the Scalable Unit were established.
Background: With the growing aging population, continual increase of the number of the old, and increase of cancer survival rate, palliative care is being considered a global public health issue. As a core force for the sustainable development of the nursing field, undergraduate nursing students' knowledge about and attitudes toward palliative care will directly affect the quality of care for dying patients in the future.
Objective: To investigate undergraduate nursing students' knowledge about and attitudes toward palliative care and analyze their influencing factors.
Methods: This descriptive and cross-sectional survey was conducted in 2016. A total of 1200 Chinese undergraduate nursing students were randomly selected as the survey subjects using stratified sampling method. The revised palliative care quiz for nursing (PCQN) and a self-designed questionnaire were used to measure students' knowledge and attitudes.
Results: The mean score of the revised PCQN was 16.10 ± 5.04. Only a few respondents (19.8%) expressed desire to work in palliative care in the future. The findings show that knowledge and school, grade, gender, birthplace, and religious beliefs have statistically significant impacts (P < 0.01). In addition, logistic regression analysis showed that talking about death and caring for dying family members can have a significant influence on students' attitudes (P < 0.05).
Conclusion: At present, Chinese undergraduate nursing students' knowledge about palliative care is minimal with the majority holding negative attitudes. Thus, the development of an effective end-of-life care program for nursing students is critical.
PURPOSE: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single open-ended question from a larger survey are presented.
METHODS: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data.
RESULTS: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings.
CONCLUSION: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease.
BACKGROUND: Effective training at medical school is essential to prepare new doctors to safely manage patients with palliative care (PC) and end of life care (EOLC) needs. The contribution of undergraduate PC course organisers is central but their collective views regarding role are unknown.
OBJECTIVE: To survey attitudes of PC course organisers regarding their course, organisation, the adequacy of training provided and level of personal satisfaction.
METHODS: An anonymised, multifactorial, web-based questionnaire was devised, tested, modified and then sent to lead PC course organisers at all UK medical schools.
RESULTS: Data were obtained from all 30 UK medical schools. Organisers agreed/strongly agreed (=agreed) that their PC course was highly rated by students (26, 87%). 25 (83%) agreed their course 'enabled misconceptions and fears about PC, death, dying and bereavement to be addressed', 'delivered quality PC training' (23, 77%), 'fulfilled General Medical Council requirements' (19, 63%), 'prepared students well to care for patients with PC/EOLC needs' (18, 60%) and 'enabled students to visit a hospice and see the role of doctors in caring for the dying' (17, 57%). Concerns were limited capacity to accommodate students (agreed 20, 66%) and variability in teaching according to location (15, 50%). Most agreed their institution recognised PC training as important (22, 73%), they felt supported by colleagues (21, 70%) and experienced cooperation between stakeholders (20, 67%). All agreed that PC training was essential for undergraduates, while 29 (97%) supported inclusion of a hospice visit in the curriculum. 27 agreed that their role was satisfying (90%), 3 disagreed (10%).
CONCLUSIONS: Approximately two-thirds of organisers were generally positive about their PC course, institution and role. A minority expressed concerns; these may reflect suboptimal PC training at their medical school and poor preparation of new doctors.
OBJECTIVES: During their careers, all doctors will be involved in the care of the dying, and this is likely to increase with current demographic trends. Future doctors need to be well-prepared for this. Little is known about medical students' expectations about providing palliative care. Our aim was to investigate how satisfying students expect palliative care to be, and any attitudes towards palliative care associated with a negative expectation.
METHODS: Fifteen UK medical schools participated in the study, with 1898 first and final year students completing an online questionnaire which investigated how satisfying they expect providing palliative care to be and their attitudes towards palliative care.
RESULTS: At both the beginning and end of their training, a significant proportion of students expect palliative care to be less satisfying than other care (19.3% first year, 16% final year). Students expecting palliative care to be less satisfying were more likely to be men, and their attitudes suggest that while they understand the importance of providing palliative care they are concerned about the potential impact of this kind of work on them personally.
CONCLUSIONS: Medical student education needs to address why palliative care is important and how to deliver it effectively, and the strategies for dealing positively with the impact of this work on future clinicians.
Objective: To describe how breaking bad news (BBN) is currently taught in Canadian general paediatric residency programs and the confidence level of fourth year paediatric residents (Ped-PGY4) in BBN and managing end-of-life-care (EOLC).
Methods: A prospective, cross-sectional survey of General Paediatric Residency Program Directors (PDs) and Ped-PGY4s was conducted.
Results: When learning to BBN, residents state faculty observation (22/23) and interactive workshops (14/23) are the most helpful, while PDs state interactive workshops (9/16) and deliberate practice (5/16) are ideal. Residents identified a knowledge gap and discomfort with providing anticipatory guidance, and symptom management, including prescribing opioids.
Conclusions: In the era of competency-based medical education, there is an opportunity to create a standardized national curriculum addressing universal competencies related to BBN and EOLC.
BACKGROUND: Mentoring nurtures a mentee's personal and professional development. Yet conflation of mentoring approaches and a failure to contend with mentoring's nature makes it difficult to study mentoring processes and relationships. This study aims to understand of mentee experiences in the Palliative Medicine Initiative (PMI). The PMI uses a consistent mentoring approach amongst a homogeneous mentee population offers a unique opportunity to circumnavigate conflation of practices and the limitations posed by mentoring's nature. The data will advance understanding of mentoring processes.
METHODS: Sixteen mentees discussed their PMI experiences in individual face-to-face audio-recorded interviews. The two themes identified from thematic analysis of interview transcripts were the stages of mentoring and communication.
RESULTS: The 6 stages of mentoring are the 'pre-mentoring stage', 'initial research meetings', 'data gathering', 'review of initial findings, 'manuscript preparation" and 'reflections'. These subthemes sketch the progression of mentees from being dependent on the mentor for support and guidance, to an independent learner with capacity and willingness to mentor others. Each subtheme is described as stages in the mentoring process (mentoring stages) given their association with a specific phase of the research process. Mentoring processes also pivot on effective communication which are influenced by the mentor's characteristics and the nature of mentoring interactions.
CONCLUSION: Mentoring relationships evolve in stages to ensure particular competencies are met before mentees progress to the next part of their mentoring process. Progress is dependent upon effective communication and support from the mentor and appropriate and timely adaptations to the mentoring approach to meet the mentee's needs and goals. Adaptations to the mentoring structure are informed by effective and holistic evaluation of the mentoring process and the mentor's and mentee's abilities, goals and situations. These findings underline the need to review and redesign the way assessments of the mentoring process are constructed and how mentoring programs are structured.