OBJECTIVES: The aim was to review evidence from all randomized controlled trials (RCTs) using palliative care education or staff training as an intervention to improve nursing home residents' quality of life (QOL) or quality of dying (QOD) or to reduce burdensome hospitalizations.
DESIGN: A systematic review with a narrative summary.
SETTING AND PARTICIPANTS: Residents in nursing homes and other long-term care facilities.
METHODS: We searched MEDLINE, CINAHL, PsycINFO, the Cochrane Library, Scopus, and Google Scholar, references of known articles, previous reviews, and recent volumes of key journals. RCTs were included in the review. Methodologic quality was assessed.
RESULTS: The search yielded 932 articles after removing the duplicates. Of them, 16 cluster RCTs fulfilled inclusion criteria for analysis. There was a great variety in the interventions with respect to learning methods, intensity, complexity, and length of staff training. Most interventions featured other elements besides staff training. In the 6 high-quality trials, only 1 showed a reduction in hospitalizations, whereas among 6 moderate-quality trials 2 suggested a reduction in hospitalizations. None of the high-quality trials showed effects on residents' QOL or QOD. Staff reported an improved QOD in 1 moderate-quality trial.
CONCLUSIONS AND IMPLICATIONS: Irrespective of the means of staff training, there were surprisingly few effects of education on residents' QOL, QOD, or burdensome hospitalizations. Further studies are needed to explore the reasons behind these findings.
De quoi et où meurent les Françaises et Français ? Quelle est l’offre sanitaire globale mais aussi plus spécifiquement de soins palliatifs aujourd’hui en France ? Quel est le profil des patients pris en charge dans les unités de soins palliatifs ? Quelle est la part des personnes âgées de 75 ans et plus dans les statistiques de mortalité ? Quelles sont leurs particularités ? Observe-t-on des différences géographiques concernant toutes ces données ?
Cette deuxième édition de l'Atlas national a vocation à répondre à ces multiples questions pour aider le lecteur à appréhender les enjeux et les réalités de l’accompagnement de la fin de vie et de la place des soins palliatifs en France aujourd’hui. Il rassemble des données démographiques, sanitaires qui sont analysées le plus finement possible pour mettre en lumière les spécificités départementales en termes d’offre sanitaire mais aussi de besoins des patients dans leurs trajectoires de fin de vie.
OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.
DESIGN: Qualitative study using interviews and focus groups.
SETTING: Health and Social Care Services in the North of England.
PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members.
RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.
CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.
OBJECTIVES: This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.
DESIGN: This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.
SETTING: All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.
PARTICIPANTS: We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.
RESULTS: Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.
CONCLUSIONS: Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.
BACKGROUND: In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important.
OBJECTIVE: We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach.
METHODS: Family conferences comprised three phases designed according to telehealth implementation guidelines-the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: "team talk," "option talk," and "decision talk." The model has been implemented at a national cancer treatment center in Taiwan since February 2020.
RESULTS: From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients' mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as good or very good (36%), whereas 9 were neutral (64%).
CONCLUSIONS: Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.
Depuis plusieurs décennies, de nombreux rapports insistent sur la nécessité de diffuser les soins palliatifs en formant les étudiants en médecine à cette pratique. Dans ce contexte, l’évaluation des dispositifs pédagogiques est un impératif. Une recherche qualitative est réalisée auprès de 18 internes en médecine ayant effectué un stage de 6 mois dans une équipe de soins palliatifs, fixe ou mobile. Cette étude exploratoire vise à recueillir le retour qu’ils font sur leurs vécus lors du stage, les compétences qu’ils ont acquises, leurs appréciations sur les modalités pédagogiques. Après analyse des entretiens, cinq thématiques sont identifiées. Les internes décrivent une déstabilisation initiale en début de stage. Ils relatent un renforcement de leurs compétences professionnelles avec l’apprentissage d’un meilleur rapport à leurs émotions. Ils font le constat que de nombreuses compétences sont transférables dans leur spécialité, mais que, bien souvent, la compétence délibérative ne peut être vécue qu’individuellement. Ils mentionnent une expérience de questionnement et de réflexivité sur leur parcours professionnel et personnel. Ils soulignent le rôle favorable de l’accompagnement pédagogique. Si l’apport d’un stage en équipe de soins palliatifs apparaît manifeste, il importe que les référents pédagogiques mènent une réflexion éthique afin de bien comprendre les fondements de la clinique palliative mais aussi les décalages, les tensions, voire les paradoxes vis-à-vis du référentiel médical actuel.
Introduction : La plupart des Français souhaitent mourir à domicile mais peu d’entre eux y décèdent réellement. L’expression par le patient de son souhait sur le lieu de son décès en favorise le respect, mais les médecins connaissent peu ces souhaits. L’objectif de l’étude est de recueillir la façon dont les personnes en situation palliative à domicile envisagent d’aborder le lieu de décès avec leur médecin généraliste.
Méthode : Une étude qualitative a été réalisée par entretiens individuels semi-dirigés au domicile des personnes atteintes d’une pathologie incurable avec un pronostic vital entre 4 semaines et 2 ans.
Résultats : 15 entretiens ont été menés. La plupart des personnes interrogées souhaitent mourir à la maison, proche des leurs, mais le besoin d’être accompagné et de préserver leur entourage semble être plus important pour elles. Elles attendent que le médecin traitant aborde la fin de vie et le lieu de décès avec disponibilité, écoute et bienveillance, et qu’il y montre de l’intérêt. L’émergence de trois profils (paternaliste, autonomiste et intermédiaire) illustre la façon dont elles envisagent ces discussions avec leur médecin traitant.
Discussion : Les personnes en situation palliative à domicile attendent que le médecin traitant aborde la fin de vie avec une attitude adaptée au profil de chacun. Une consultation dédiée permettrait au médecin généraliste de créer des conditions favorables afin de donner au malade une opportunité d’aborder ce sujet sensible et de respecter ses souhaits.
Conclusion : Les malades souhaitent une implication du médecin généraliste dans les discussions anticipées.
Palliative care is provided at a certain timepoint, both in a person's life and in a societal context. What is considered to be a good death can therefore vary over time depending on prevailing social values and norms, and the person's own view and interpretation of life. This means that there are many interpretations of what a good death can actually mean for an individual. On a more general level, research in palliative care shows that individuals have basic common needs, for example physical, mental, social and spiritual well-being. Therefore, in today's pluralistic Western society, it becomes important that palliative care is person centred to enable individuals to receive, as far as can be achieved, care that promotes as good a life as possible based on the person's own needs and preferences, and in accordance with evidence and current laws. For many years a research group, consisting nurse researchers together with nurses working in palliative care, has developed a model for person-centred palliative care, the 6S-model. The model's central concept is Self-image, where the starting point is the patient as a person and their own experience of the situation. The other concepts: Self-determination, Symptom relief, Social relationships, Synthesis and Strategies are all related to the patient's self-image, and often to each other. The model's development, value base and starting assumptions are reported here, as are examples of how the model is applied in palliative care in Sweden. The model has been, and still is, constantly evolving in a collaboration between researchers and clinically active nurses, and in recent years also with patients and close relatives.
Along their professional career, nurses can find patients who require palliative care (PC). It is necessary to have at least a basic education in this area, that should be acquired during their university education. The objective of this descriptive online-survey set in five nursing Colleges was to analyze Spanish nursing students' knowledge in PC, offering an image of the status of education in PC. 619 students took an online questionnaire with the Spanish version of the Palliative Care Quiz for Nurses (PCQN-SV), which also collected information about their education in the field of PC. Univariate and bivariate analyses were performed, and a predictive binary logistic regression model was developed. Students obtained an average 45.65% of right answers in PCQN-SV, with differences related to the college and academic year in which they were enrolled and to their education in PC. In the regression model having theoretical education in PC (OR = 1.70) and academic year (OR = 1.35) showed to be both predictors of getting a result in PCQN-SV over 45% of correct answers. This study showed that Spanish nursing students have a medium-low level of knowledge in PC, and it also supports the need to develop a common framework for nurses' education in PC.
BACKGROUND: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life.
AIM: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage.
DESIGN: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants' reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach.
SETTING/PARTICIPANTS: Twenty-one workers employed within three public services in Western Sydney were recruited.
RESULTS: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural.
CONCLUSIONS: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.
OBJECTIVE: There is an increasing recognition of the significance of music as a complementary therapy in palliative care. Limited studies exist on how music is used as a coping mechanism by palliative care patients. Therefore, the purpose of this scoping review was to explore the efficacy of music interventions for palliative care.
METHOD: We conducted a literature search between June and November 2019 in the Cumulative Index of Nursing and Allied Health Literature (CINAHL), British Nursing Index (BNI), and PubMed, which includes MEDLINE. The search identified eight articles which met the inclusion and exclusion criteria.
RESULTS: Using thematic analysis, six themes were synthesied to show how music contributes to palliative care. The six themes include Pain management; Relaxation; Happiness and hope; Anxiety and depression management; Enhanced spirituality; and Improved quality of life. These themes reflect the psychological and emotional benefits palliative care patients derive from music therapies.
SIGNIFICANCE OF RESULTS: Music therapy can be an effective psychosocial approach when managing palliative symptoms through its therapeutic effects on physical, psychological, emotional, and spiritual well-being.
This is a personal account of using hypnosis as an adjunct to specialist palliative care (SPC) treatment approaches. After a brief systematic review of the literature, one clinician's experience is outlined illustrated by short, anonymized case histories. It argues that the approach is underused in SPC. The barriers currently restricting its routine adoption in SPC are discussed including (1) a lack of SPC clinical trials, (2) a misunderstanding of hypnosis leading to stigma, and (3) its absence from clinicians' training pathways. While the evidence base for the effectiveness of hypnosis in 'supportive care', for example, managing chemotherapy-induced vomiting, is appreciable, there is a gap in SPC. There is little data to guide the use of hypnosis in the intractable symptoms of the dying, for example, breathlessness or the distress associated with missed or late diagnosis. There are many people now 'living with and beyond cancer' with chronic symptomatic illness, 'treatable but not curable'. Patients often live with symptoms over a long period, which are only partially responsive to pharmacological and other therapies. Hypnosis may help improve symptom control and quality of life. SPC trials are needed so that this useful tool for self-management of difficult symptoms can be more widely adopted.
BACKGROUND: Advanced practice registered nursing students need primary palliative care education to care for the growing number of patients with serious illness and their families and to fill the serious resource gaps in specialty palliative care.
PROBLEM: There has been a lack of primary palliative care education in most graduate nursing programs and little direction as to competencies and essential content.
APPROACH: In an effort to support faculty to teach palliative care content, the End-of-Life Nursing Education Consortium (ELNEC) has created an online curriculum that meets the new American Association of Colleges of Nursing Graduate-Competencies and Recommendations for Educating Nursing Students in primary palliative care for master's degree and doctor of nursing practice students.
OUTCOMES: During the first 9 months of its release, more than 170 nursing programs have accessed the ELNEC Graduate curriculum, and there have been more than 200 student completions.
CONCLUSION: Primary palliative care education is essential for all advanced practice nursing students. The new ELNEC Graduate curriculum offers the opportunity to provide quality education remotely.
Introduction: Despite growing recognition of pediatric palliative care's importance, training in palliative care communication remains a gap in medical education. Graduating medical students frequently feel unprepared to initiate or facilitate goals of care conversations with their patients, particularly in pediatrics.
Methods: We created a 3-hour session featuring an introductory lecture on pediatric palliative care, communication drills on responding to emotion, and small-group case-based discussions utilizing role-play, targeting fourth-year medical students as the primary learners. Senior residents were also given the opportunity to develop skills by role-playing the patient parent and cofacilitating case discussions alongside palliative care faculty. Students evaluated session utility and their own confidence through pre- and postsession surveys using a 5-point Likert scale (1 = strongly disagree, 5 = strongly agree).
Results: Twenty-six students were included in the analysis over 3 years. All agreed that the session was useful (M = 4.9). Students showed significant improvement in confidence in explaining pediatric palliative care (presession M = 3.2, postsession M = 4.1, p < .001), understanding the family experience (presession M = 2.7, postsession M = 4.1, p < .001), and eliciting goals and values from families whose children face serious illnesses (presession M = 3.1, postsession M = 4.1, p < .001). Pediatric resident cofacilitators also felt the session benefited their own teaching and communication skills.
Discussion: This 3-hour interactive session on pediatric palliative care utilizing communication drills and role-play was effective in improving fourth-year medical students' confidence in communicating with families of children facing life-threatening illnesses.
BACKGROUND: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure.
AIM: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure.
DESIGN: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools' development, evaluation, feasibility, and implementation was sought and described.
DATA SOURCES: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included.
RESULTS: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess.
CONCLUSION: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.
With an increasingly ageing population there will be a rising demand for palliative care, including from older migrants and ethnic minorities. While many (future) physicians are unfamiliar with specific needs of older migrants and ethnic minorities regarding care and communication in palliative care, this may be challenging for them to deal with. Moreover, even many medical teachers also feel unprepared to teach palliative care and culturally sensitive communication to students. In order to support medical teachers, we suggest twelve tips to teach culturally sensitive palliative care to guide the development and implementation of teaching this topic to medical students. Drawn from literature and our own experiences as teachers, these twelve tips provide practical guidance to both teachers and curriculum designers when designing and implementing education about culturally sensitive palliative care.
Palliative care emphasizes expertise in handling difficult conversations, discussing patients' wishes and supporting the caregiver(s). Here we outline the palliative approach of hoping for the best while preparing for the worst in several "what if" scenarios for people with Parkinson disease and their families during the COVID-19 pandemic.
BACKGROUND: Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in the final stages of their life. Lack of knowledge of and negative attitude palliative care among nurses is one of the most common barriers to quality palliative care. This study, therefore, aimed to assess nurses' knowledge about palliative care and attitude toward end-of-life care in public hospitals in Wollega zones, Ethiopia.
METHODS: A multicenter institutional-based cross-sectional study design was employed to collect data from 372 nurses working in public hospitals in Wollega zones from October 02-22, 2019. A self-administered questionnaire with three different parts: Demographic characteristics of nurses, the Palliative Care Quiz for Nursing (PCQN), and the Frommelt Attitudes Towards Care of the Dying (FATCOD). SPSS version 21 was used for analysis used for data analysis. The binary logistic regression test was used for analysis at p < 0.05.
FINDINGS: Our final sample size was 422 nurses (response rate = 88%). With the mean total PCQN scores (9.34), the majority of them showed an inadequate level of knowledge about palliative care. The mean total FATCOD scores (79.58) displayed a positive attitude toward end-of-life care, with 52% of respondents eager to care for a dying person and their family. Nurses who had PC service experience [AOR = 1.94 CI (1.10-3.42), p = 0.02] and had ever attended training/lecture on PC [AOR = 1.87 CI (1.01-3.46), p = 0.04] were independently associated with nurses' knowledge about PC. Similarly, nurses who had no PC service experience [AOR = 0.41, CI (0.21-0.79), p = 0.008], who read articles/brochures about PC [AOR = 1.94, CI (1.11-3.39), p = 0.01] and had provided care for a smaller number of terminally ill patients [AOR = 1.74, CI (1.01-2.97), p = 0.04] were significantly associated with nurses' attitude towards end-of-life care.
CONCLUSION: The study highlighted that nurses' knowledge about palliative care is inadequate, and showed a less favorable attitude toward end-of-life care. The findings also provide evidence for greater attentions and resources should be directed towards educating and supporting nurses caring for patients with palliative care needs in Wollega Zones.