Context: Patients with advanced cancer face a life-limiting condition that brings a high symptom burden that often includes pain, fatigue, and psychological distress. Psychosocial interventions have promise for managing symptoms but need additional tailoring for these patients' specific needs. Patients with advanced cancer in the community also face persistent barriers—availability of interventions in community clinics as well as financial and illness-related factors—to accessing psychosocial interventions.
Objectives: The aim of the present study was to assess the feasibility and acceptability of telephone implementation of Engage, a novel brief combined Coping Skills Training and Acceptance and Commitment Therapy protocol, for reducing symptoms and increasing quality of life in community patients with advanced cancer.
Methods: Adult patients with advanced cancer receiving care in the community received Engage, four 60-minute manualized telephone sessions delivered by a trained psychotherapist and completed pretreatment and post-treatment assessments.
Results: Engage was feasible, achieving 100% accrual (N = 24) of a heterogeneous sample of patients with advanced cancer, with good retention (88% completed). Acceptability was demonstrated via satisfaction (mean 29 of 32; SD 2), engagement (95% attendance), and use of skills. Secondary analyses pointed to reductions in pain interference, fatigue, psychological distress, and improvements in psychological acceptance and engagement in value-guided activity after treatment.
Conclusion: Engage, our brief novel combined Coping Skills and Acceptance and Commitment Therapy intervention, demonstrated initial feasibility and acceptability when delivered over the telephone and increased access for community clinic patients with advanced cancer. Future research will assess the comparative efficacy of Engage in larger randomized trials.
All of us, without exception, must sooner or later face the inevitability of death. However, as comparative studies of different cultures show, the idea that death is something to be feared, denied or hidden away is far from universal. Undeniably, many people do not have a ‘good’ death, and those with a terminal illness experience suffering, pain, and even despair, a sense of dignity lost. But is this the only possible narrative? In 2014, and again in 2019, I had the opportunity to spend time as an observer in a palliative care unit. I hold a BA, a PhD in Humanities, and since 2014 my research has focused on end of life care. Even though I work in a clinical lab, the day to day activity in a clinical setting is a distant reality. However, at no other point in my life have I experienced a stronger sense of ‘reality’—the reality of life, of death, of what it means to love someone, of one’s own life entwined with that of another person. Witnessing the end-of-life can be a profound experience—what Kant would call the sublime—and it can unsettle, in a good way, anyone who comes to encounter it while unaware of its potential. My aim in this paper is to explain why I believe that the end of life in a palliative care context is an opportunity to experience the sublime and an authentic transformative experience. Finally, I describe four short stories to better understand what the experience of the sublime might be in the context of clinical practice.
BACKGROUND: Studies of nurses' required competence in EOL care in health centres are rare. It is important to produce information about experienced nurses' perceptions of the competence they consider important in their practical work.
AIM: The aim of this study was to describe nurses' required competence in EOL care in health centre inpatient wards as experienced by nurses.
METHOD: A descriptive qualitative study using four semi-structured group interviews (20 nurses) and inductive descriptive content analysis.
RESULTS: Five categories describing nurses' required competence in EOL care in a health centre inpatient ward were identified: (1) ethics and courage in action, (2) support for the patient, (3) support for the family, (4) care planning and (5) physical care. Factors promoting nurses' competence in EOL care comprised two categories: (1) professional development in EOL care and (2) an organisation that supports EOL care.
CONCLUSIONS: End-of-life care in health centre inpatient wards requires wide and complex competence from nurses. Nurses' experiences of required competence are associated with holistic care of the patient, encountering the family and multiprofessional cooperation. Nurses' competence in EOL care could be enhanced with postgraduate education, and educational planning should be given more attention in the future.
Background: Experts recommend integrating palliative care throughout the four-year medical school curriculum, including in required clerkships such as internal medicine (IM).
Objective: The aim of this study was to determine whether third-year medical students could gain meaningful experience in primary palliative care during their IM clerkship with observation and feedback from internists and/or IM residents or fellows.
Design: We implemented two clinical exercises: (1) perform advance care planning with a patient and (2) participate in the delivery of important news. Students self-reported aspects of their experience in a confidential online survey.
Setting/Subjects: Third-year medical students enrolled in a required IM clerkship.
Measurements: Students reported the setting in which they completed the exercises, their level of independence, and their level of comfort with advance care planning after completing the exercise. We performed a qualitative analysis of open-ended comments to determine domains, themes, and subthemes and a separate analysis to determine the extent to which the comments suggested learning relevant to the stated learning objectives for each exercise.
Results: The majority of students completed both exercises without palliative care specialists present, 76% (196/258) for the advance care planning exercise and 75% (195/259) for important news. Fifty-one percent (132/258) of students completed advance care planning with a significant level of independence, and 70% (182/258) reported being comfortable or very comfortable with advance care planning after completing the exercise. Qualitative analyses of student comments found that the majority of students described learning something related to the stated learning objectives for each exercise and suggested that they gained an appreciation of the complexity of patient-provider interactions around serious illness and palliative care.
Conclusion: We found it feasible to integrate clinical exercises in advance care planning and delivering important news into an IM clerkship.
Background: Although statements on the competencies required from physicians working within palliative care exist, these requirements have not been described within different levels of palliative care provision by multi-professional workshops, comprising representatives from working life. Therefore, the aim of this study was to describe the competencies required from physicians working within palliative care from the perspectives of multi-professional groups of representatives from working life.
Methods: A qualitative approach, using a workshop method, was conducted, wherein the participating professionals and representatives of patient organizations discussed the competencies that are required in palliative care, before reaching and documenting a consensus. The data (n = 222) was collected at workshops held in different parts of Finland and it was analyzed using a qualitative content analysis method.
Results: The description of the competencies required of every physician working within palliative care at the general level included 13 main categories and 50 subcategories in total. ‘Competence in advanced care planning and decision-making’ was the main category which was obtained from the highest number of reduced expressions from the original data (f = 125). Competence in social interactions was another strong main category (f = 107). In specialist level data, six main categories with 22 subcategories in total were found. ‘Competence in complex symptom management’ was the main category which was obtained from the biggest number of reduced expressions (f = 46). A notable association between general level and specialist level data was related to networking, since one of the general level categories was ‘Competence in consultations and networking’ (f = 34) and one of the specialist level categories was ‘Competence to offer consultative and educational support to other professionals’ (f = 30). Moreover, part of the specialist level results were subcategories which belonged to the main categories produced from the general level data.
Conclusions: The competencies described in this study emphasize decision-making, social interactions and networking. It is important to listen to the voices of the working-life representatives when planning curricula. Moreover, the views of the working-life representatives inform how the competencies gained during their education meet the challenges of the ordinary work.
Background: Providing end of life care (EoLC) is an important aspect of primary care, which reduces the risk of hospital admission for most patients. However, general practitioners (GPs) seem to have low confidence in their ability to provide EoLC. Little is known about an adequate volume and kind of training in EoLC among GP trainees.
Methods: We performed a before-after comparison in all post-graduate GP trainees who were registered in the vocational training program (KWBW VerbundweiterbildungPLUS). They were offered participation within a two-day seminar focussing on palliative care in 2017. Those who attended the seminar (intervention group I) completed a paper-based questionnaire directly before the intervention (T1) and 6 months after (T2). None-attendees (group C) were also asked to fill out the questionnaire once. The questionnaire covered previous experiences in palliative care, self-assessment of competencies in EoLC in the organisation of patient care as well as in control of symptoms, attitudes towards death and caring for dying patients and questions about GPs’ role in EoLC.
Results: In total, 294 GP trainees (I: n = 219; C: n = 75) participated in the study. Of those, more than 90% had previously gained experience in EoLC mainly during vocational training in the hospital rotation. Around a third had previously gained competencies in EoLC in medical school. Between groups I (T1) and C no significant differences were observed in socio-demographic characteristics, pre-existing experience or overall expertise. At T2, 75% of participants of group I declared they have extended their competencies in EoLC after the intervention and 70% classified the intervention as helpful or very helpful. Overall, they rated their competencies significantly higher than at T1 (p < 0.01). In detail, competencies in organisation of EoLC and competencies in handling of symptoms significantly improved (p < 0.01). Due to the intervention, 66% could reflect their attitudes towards dying, death and grief and 18% changed their attitudes. Group I highlighted palliative care as one of GPs tasks (Likert 4.47/5, SD 0.75).
Conclusions: The intervention fostered personal competencies, understanding and self-confidence in EoLC among GP trainees. This is crucial for the aim to broadly provide EoLC.
Objectives: Optimal cystic fibrosis (CF) end-of-life care (EOLC) is a challenge. There is little formal guidance about who should deliver this and how CF multi-disciplinary teams should interact with specialist palliative care. We assessed the knowledge, experience and preparedness of both CF and palliative care professionals for CF EOLC.
Methods: An electronic questionnaire was distributed to all members of the Oxford adult CF and palliative care teams.
Results: 35 of a possible 63 members responded (19 CF team; 16 palliative care). Levels of preparedness were low in both groups. Only 11% of CF and 19% of palliative care team members felt fully prepared for EOLC in adult CF. 58% of CF members had no (21%) or minimal (37%) general palliative care training. Similarly, 69% of the palliative care team had no CF-specific training. All respondents desired additional education. CF team members preferred further education in general EOLC while palliative care team members emphasised a need for more CF-specific knowledge.
Conclusions: Few members of either the CF or palliative care teams felt fully prepared to deliver CF EOLC and many desired additional educations. They expressed complementary knowledge gaps, which suggests both could benefit from increased collaboration and sharing of specialist knowledge.
As nearly all doctors deal with patients requiring palliative care, it is imperative that palliative care education starts early. This study aimed to validate a national, palliative care competency framework for undergraduate medical curricula. We conducted a Delphi study with five groups of stakeholders (palliative care experts, physicians, nurses, curriculum coordinators, and junior doctors), inviting them to rate a competency list. The list was organized around six key competencies. For each competency, participants indicated the level to which students should have mastered the skill at the end of undergraduate training. Stability was reached after two rating rounds (N = 82 round 1, N = 54 round 2). The results showed high levels of agreement within and between stakeholder groups. Participants agreed that theoretical knowledge is not enough: Students must practice palliative care competencies, albeit to varying degrees. Overall, communication and personal development and well-being scored the highest: Junior doctors should be able to perform these in the workplace under close supervision. Advance care planning scored the lowest, indicating performance in a simulated setting. A wide range of stakeholders validated a palliative care competency framework for undergraduate medical curricula. This framework can be used to guide teaching about palliative care.
Objective: to explore self-perception competence among Spanish nurses dealing with patient death and its relationship with work environment, evidence-based practice, and occupational stress.
Method: a cross-sectional web-based survey collected information from a convenience sample of 534 nurses from professional Spanish Colleges who answered four validated questionnaires: Coping with Death Scale, Practice Environment Scale of the Nursing Work Index, Perception of Evidence-Based Practice (EBP) and Nursing Stress Scale.
Results: a total of 79% of the participants were women, the average age was 40 years old, 38% had a postgraduate degree and 77% worked in public health settings. Many nurses evaluated their work environment as unfavorable (66%), reported high occupational stress (83.5±14.9), and had high scores on knowledge/skills in EBP (47.9±11.3). However, 61.2% of them perceived an optimal coping (>157 score). The multivariate logistic model indicated positive associations with work environment and EBP characteristics (OR: 1.30, p=0.054; OR: 1.04, p=0.007; OR: 1.13, p<0.001, respectively) but negative associations with occupational stress and short work experience (OR: 0.98, p=0.0043; OR: 0.74, p<0.002, respectively). These factors explained 23.1% of the coping variance (p<0.001).
Conclusion: although most nurses perceived optimal coping, the situation could be enhanced by modifying several contextual factors. The identification of these factors would improve the quality of end-of-life care by facilitating nursing management.
Objectif : Dans le cadre d’un projet de compagnonnage à destination des soignants du domicile, notre Equipe Mobile de Soins Palliatifs a souhaité évaluer leur niveau de qualification en soins palliatifs.
Matériel et méthode : Un QCM de 20 questions a été créé afin d’explorer le niveau de formation, d’expérience et de connaissances en soins palliatifs. Il a été soumis à toutes les infirmières libérales installées sur la communauté de commune du Grand Pontarlier, soit 20 infirmières. Ce travail original a fait l’objet d’un mémoire de DIU soins palliatifs.
Résultats : Le taux de réponse est de 85 %. Le niveau de formation et d’expérience est très faible. Aucune infirmière n’a de diplôme universitaire ou d’expérience en équipe mobile ou unité de soins palliatifs. La prise en charge des symptômes et les lois de soins palliatifs sont peu connues.
Conclusion : La méthode est simple. Elle peut être utilisée par d’autres équipes pour évaluer d’autres professionnels de santé. Ce travail a suscité un vif intérêt de la part des infirmières libérales, sans doute parce que si elles suivent peu de patients en soins palliatifs chaque année, leurs difficultés sont réelles. Ces difficultés, révélées dans d’autres travaux, peuvent être mises en lien avec le faible niveau de formation et d’expérience mis en évidence. Notre travail de formation devra permettre une meilleure qualité de prise en charge du patient.
BACKGROUND, AIM, AND HYPOTHESIS: This randomized controlled trial aimed to compare the impact of a physician's attire on the perceptions of patients with cancer of compassion, professionalism, and physician preference. Our hypothesis was that patients would perceive the physician with formal attire as more compassionate than the physician wearing casual attire.
MATERIALS AND METHODS: One hundred five adult follow-up patients with advanced cancer were randomized to watch two standardized, 3-minute video vignettes with the same script, depicting a routine physician-patient clinic encounter. Videos included a physician in formal attire with tie and buttoned-up white coat and casual attire without a tie or white coat. Actors, patients, and investigators were all blinded to the purpose and videos watched, respectively. After each video, patients completed validated questionnaires rating their perception of physician compassion, professionalism, and their overall preference for the physician.
RESULTS: There were no significant differences between formal and casual attire for compassion (median [interquartile range], 25 [10-31] vs. 20 [8-27]; p = .31) and professionalism (17 [13-21] vs. 18 [14-22]; p = .42). Thirty percent of patients preferred formal attire, 31% preferred casual attire, and 38% had no preference. Subgroup analysis did not show statistically significant differences among different cohorts of age, sex, marital status, and education level.
CONCLUSION: Doctors' attire did not affect the perceptions of patients with cancer of physician's level of compassion and professionalism, nor did it influence the patients' preference for their doctor or their trust and confidence in the doctor's ability to provide care. There is a need for more studies in this area of communications skills.
Clinical trial identification number. NCT03168763
IMPLICATIONS FOR PRACTICE: The significance of physician attire as a means of nonverbal communication has not been well characterized. It is an important element to consider, as patient preferences vary geographically, are influenced by cultural beliefs, and may vary based on particular care settings. Previous studies consisted of nonblinded surveys and found increasing confidence in physicians wearing a professional white coat. Unfortunately, there are no randomized controlled trials, to the authors' knowledge, to confirm the survey findings. In this randomized, blinded clinical trial the researchers found that physician's attire did not affect patients' perception of the physician's level of compassion and professionalism. Attire also did not influence the patients' preferences for their doctor or their trust and confidence in the doctor's ability to provide care.
PURPOSE: This study aimed to evaluate what types and forms of support nursing staff need in providing palliative care for persons with dementia. Another aim was to compare the needs of nursing staff with different educational levels and working in home care or in nursing homes.
DESIGN: A cross-sectional, descriptive survey design was used.
METHODS: A questionnaire was administered to a convenience sample of Dutch nursing staff working in the home care or nursing home setting. Data were collected from July through October 2018. Quantitative survey data were analyzed using descriptive statistics. Data from two open-ended survey questions were investigated using content analysis.
FINDINGS: The sample comprised 416 respondents. Nursing staff with different educational levels and working in different settings indicated largely similar needs. The highest-ranking needs for support were in dealing with family disagreement in end-of-life decision making (58%), dealing with challenging behaviors (41%), and recognizing and managing pain (38%). The highest-ranking form of support was peer-to-peer learning (51%). If respondents would have more time to do their work, devoting personal attention would be a priority.
CONCLUSIONS: Nursing staff with different educational levels and working in home care or in nursing homes endorsed similar needs in providing palliative care for persons with dementia and their loved ones.
CLINICAL RELEVANCE: It is critical to understand the specific needs of nursing staff in order to develop tailored strategies. Interventions aimed at increasing the competence of nursing staff in providing palliative care for persons with dementia may target similar areas to support a heterogeneous group of nurses and nurse assistants, working in home care or in a nursing home.
Les personnes hébergées en centre d'hébergement et de soins de longue durée (CHSLD) présentent des problèmes de santé complexes. Les infirmières qui oeuvrent dans ce milieu doivent désormais les accompagner dans les différentes transitions, allant de leur admission jusqu'aux soins palliatifs et de fin de vie. Les soins palliatifs offerts en CHSLD font face à une augmentation importante des taux de décès, ainsi qu'à la nécessité d'optimiser les compétences des infirmières pour répondre aux besoins des personnes qui y sont hébergées. La pratique réflexive (PR) en groupe apparaît comme une approche novatrice dont les résultats semblent positifs pour le développement des compétences professionnelles. A notre connaissance, aucune étude ne s'est intéressée à la PR dans un contexte de soins palliatifs en CHSLD. La présente étude vise donc à évaluer l'influence d'une intervention de PR en groupe sur la perception de compétence en soins palliatifs des infirmières (PCISP) en CHSLD.
An interprofessional conference that addressed basic palliative care knowledge and skills was implemented annually at a large, academic healthcare institution. The conference significantly influenced participant's self-perceived competencies in the delivery of quality palliative care. This conference led to a sustainable program of palliative care initiatives consisting of a yearly workshop for nurses focused on palliative care core competencies and a biennial interprofessional conference designed to facilitate networking and address significant topics in palliative care.
La formation continue est un enjeu majeur pour l'appropriation du rôle et le développement des connaissances et des compétences des personnes ressources. La Haute Ecole de Santé de Genève (HEdS) propose tous les ans des prestations de formation continue comprenant des formations post grades construites en partenariat avec les milieux professionnels et souvent co-organisées avec d'autres écoles romandes. Par des processus de formation d'adultes en prise avec l'actualité, elles permettent aux participants d'analyser les pratiques individuelles, collectives, institutionnelles et sociales, et de développer leurs compétences.
Interprofessional shadowing, whereby medical students take on the role of another profession, is an effective interprofessional education (IPE) method to promote interprofessional teamwork. Palliative care is an ideal setting for IPE as multidisciplinary teams work together to deliver holistic patient care. This brief report explores junior doctors' experiences in shadowing nurses to provide care to patients in a hospice setting in New Zealand. We conducted semi-structured interviews with six participants to find out the impact that this shadowing experience had on their professional development and feasibility of incorporating this activity into the undergraduate medical curriculum. Inductive thematic analysis revealed that shadowing a nurse for two days increased participants' awareness of the nursing role and gave them the opportunity to develop a personal relationship with their patients, both of which made participants actively reflect on the value of IPE and the way they practice medicine. Participants considered the palliative care setting as conducive to IPE and saw the value of incorporating interprofessional shadowing into the undergraduate medical curriculum.
BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.
AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.
DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.
RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.
CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.
AIMS: We aimed to answer the question: what is the evidence that post-registration palliative care education for nurses improves practice?
BACKGROUND: The 2008 End of Life Care Strategy emphasised the need for a workforce equipped to provide high-quality end-of-life care for patients and their families. As registered nurses are the healthcare professionals spending most time with patients and families at the end of life, associated policy documents stress the importance of educating nurses to equip them with the necessary knowledge and skills to provide effective care. Despite education being a consistent recommendation, the ability of education to influence nursing practice is uncertain.
METHODS: We undertook a systematic review of literature using Joanna Briggs Institute Methodology for Mixed Methods by searching the Medline, Embase and CINAHL databases between January 2006 and December 2018.
FINDINGS: Ten studies met the inclusion criteria, seven contained quantitative data. Six demonstrated improvements in outcome measures, but not all results were statistically significant. Most quantitative data related to self-reported measures of confidence. Six studies contained qualitative findings that were categorised into themes: confidence, practice change, skills and proactivity.
CONCLUSION: Little research exists exploring the impact of post-registration palliative care education for nurses. Existing outcome measures do not clearly demonstrate changes to end-of-life practice. Research is suggested to establish links between self-reported confidence and improvements to practice. Evaluation of the impact on practice should be an integral component of end-of-life education initiatives.
BACKGROUND: CaseSearch 'My Learning' e-learning modules were designed to remind clinicians and practitioners about the role of evidence in practice and demonstrate how to find relevant evidence to make a difference in clinical care. This study aims to describe the role of the modules and their uptake, and determine whether the modules influenced the learners' palliative care practice and whether the modules were easy to use.
METHOD: Two sets of questions were designed to capture data to evaluate the modules.
FINDINGS: The modules supported the awareness and use of evidence by health professionals. The modules contribute to ongoing professional development for practitioners and can improve palliative care practice.
CONCLUSION: It is possible to collect meaningful data that contributes to understanding who uses e-learning resources and how useful healthcare professionals find them.
Palliative care as a foundation for patient-centered care is not adequately covered in nursing curricula. This gap in education means that pediatric oncology nurses may lack necessary palliative care competencies to provide comprehensive care to patients. A literature review was performed to determine if nurses believe that they are prepared to provide clinical palliative care to pediatric patients and how pediatric palliative care best practices can be better integrated into nursing education programs. According to the literature review, studies suggest that providing pediatric palliative care education in nursing programs can build nurses' confidence and better prepare them to competently care for patients and families.