BACKGROUND: Worldwide, pharmacy practice is changing to include new roles and responsibilities. Laws enabling the implementation of assisted dying are expanding in international jurisdictions. Pharmacy practice in assisted dying is subsequently expanding. However, studies of how pharmacists experience their practice when engaged in assisted dying are absent. To progress research into the lived experiences of pharmacists practicing in assisted dying, the development of an inquiry framework to guide such research is the first step.
OBJECTIVE: The objective was to develop a theoretical framework of inquiry for use in subsequent continuing research which may explore the actual experience of pharmacy practice in assisted dying.
METHODS: Perspectives were gathered from expert and senior pharmacists who were anticipating the imminent implementation of assisted dying practice. Analysis focused on understanding what aspects of practice experience were important to them. Interview-conversations centred on the question: If you had the chance to talk to experienced pharmacist practitioners who have been involved in the practice of assisted dying, what aspects regarding their experiences, would you like to know about? A conventional approach to qualitative content analysis was utilized to analyze the data.
RESULTS: Findings summarized questions posed by pharmacists contemplating the implementation of assisted dying practice. These perspectives formed the foundation of a theoretical inquiry framework constituted by 8 inter-related dimensional range-continuums. Each range-continuum, designed to explore the lived experiences of pharmacists in practice, is defined. Examples of how the inquiry dimensions will be used to inform future exploratory research are offered within the framework.
CONCLUSIONS: The theoretical inquiry framework will be used to develop knowledge for pharmacists contemplating participation (or not) in assisted dying practice. It is timely to progress research that reveals the informed experiences of pharmacists that are actually practicing in this area. The framework may be adapted for researching pharmacists' experience in other practice areas and contexts.
District nurses are core providers of palliative care, yet little is known about the way that they provide care to people at home. This study aimed to investigate the role and practice of the district nurse in palliative care provision. This was an ethnographic study, with non-participant observation of district nurse-palliative care patient encounters, and post-observation interviews. District nurse teams from three geographical areas in northwest England participated. Data were analysed iteratively, facilitated by the use of NVivo, using techniques of constant comparison. Some 17 encounters were observed, with 23 post-observation interviews (11 with district nurses, 12 with patients/carers). Core themes were ‘planning for the future’ and ‘caring in the moment’. District nurses described how they provided and planned future care, but observations showed that this care focused on physical symptom management. District nurses engaged in friendly relationship building, which allows detailed management of symptomatology, but with little evidence of advance care planning.
The escalating number of foodborne diseases and food poisoning outbreaks demand a better call for improved food-handling practices. Hospices are typically described as nongovernmental organizations that offer palliative care to terminally ill patients. The majority of hospice food handlers are not trained in food safety aspects, and services are offered on a voluntary basis. In this study, a descriptive survey design comprising of semistructured questionnaire was utilized to assess the knowledge, attitudes, and practices of the hospice food handlers (n = 100) in hospices around Central South Africa. More than half of the participants (68%) had not taken basic food safety training. The average percentage of the correct answers on the knowledge questionnaire was 66.8%. The participants had a mean age of 35 years (SD = 9.27). Attendance of food safety course had a significant effect on both the practices of using gloves to touch or distribute unwrapped foods ( 2 = 8.411, p-value = .012), and washing hands after using gloves ( 2 = 12.560, p-value = .001). The overall KAP mean score was 78.38. A statistically significant difference was found between the trained and untrained food handlers regarding food safety knowledge (p < .001). There was substantial lack of knowledge regarding the correct temperature for a refrigerator including hot ready-to-eat food.
PURPOSE: The integration of palliative care into usual oncology care is a best practice, but implementation can be challenging.
METHODS: We convened a virtual learning collaborative (VLC) of oncology practices with a focus on integrating palliative care. The entire program was virtual, with teams meeting via online Webinar and conference call and accessing content via an online portal. Because of the need to pause and retool after the first 5 months, the VLC evolved into 2 phases, with feedback after the first phase informing the second. We primarily evaluated the reaction of participants and project team members after the completion of the VLC using 2 quantitative surveys (after each phase) and semistructured interviews with participants.
RESULTS: A total of 24 oncology practices entered the VLC. Evaluation after each of 2 phases was conducted. For the first evaluation, 67% of respondents agreed a quality improvement coach was helpful to complete the program; 61% agreed a palliative care expert was helpful. The most common reasons for withdrawal involved organizational and VLC factors. Organizational factors included: time constraints, personnel changes (turnover), loss of the champion, and lack of team engagement. Twenty-two active participants and 8 former participants completed the second survey. Of those, 79% agreed the experience with the VLC was valuable, and 74% agreed the virtual delivery mode was useful. We identified 3 themes to drive future improvements related to structure, engagement, and content.
CONCLUSION: VLCs are a potential mechanism to disseminate information and facilitate learning in oncology. Further study of program characteristics that promote acceptance of VLCs are needed.
The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding deactivation of the shock function of the ICD. However, research shows that such conversations are scarce, and some patients experience avoidable and distressful shocks in the final days of life. Barriers such as physicians’ lack of time, difficulties in finding the right time to discuss ICD deactivation, patients’ reluctance to discuss the topic, and the fragmentation of care, which obscures responsibilities, prevent healthcare professionals from discussing this topic with the patient. In this point-of-view article, we argue that healthcare professionals who are involved in the care for ICD patients should be better educated on how to communicate with patients about ICD deactivation and the end of life. Optimal communication is needed to reduce the number of patients experiencing inappropriate and painful shocks in the terminal stage of their lives.
Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited.
Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes.
Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3–9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170–630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included “Learn how to manage, not just lead,” “Negotiate everything before you sign anything,” and “Balance patient volume with scope of practice.”
Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.
The COVID-19 pandemic has changed the way doctors approach palliative and end-of-life care, which has undoubtedly affected the mental health of patients, families, and health care professionals. Given these circumstances, doctors working on the front line are vulnerable to moral injury and compassion fatigue. This is a reflection of 2 junior doctors experiencing firsthand demands of caring for patients during the outbreak.
During the Covid-19 pandemic, a strategy to minimise face-to-face (FtF) visits and limit viral spread is essential. Video consultations offer clinical assessment despite restricted movement of people.
We undertook a rapid literature review to identify the highest currently available level of evidence to inform this major change in clinical practice. We present a narrative synthesis of the one international and one national guideline and two systematic reviews—all published within the last 18 months.
The global evidence appears to support video consultations as an effective, accessible, acceptable and cost-effective method of service delivery. Organisations must ensure software is simple, effective, reliable and safe, with the highest level of security for confidentiality.
Although video consultations cannot fully replace FtF, they can radically reduce the need for FtF and the risk of Covid-19 spread in our communities while maintaining high standards of care. For patient safety, it will be critical to follow the WHO guidance regarding: a standard operating procedure; clinical protocols for when video consultations can (and cannot) be used; policies to ensure equity of access in disadvantaged populations; adequate staff training; and administrative support to coordinate appointments.
Background: Staff nurse clinical leadership is a relatively new concept that includes the elements of collaboration, coordination, patient advocacy, and often quite autonomous decision-making required of palliative care nurses. Staff nurses need structural and psychological empowerment to develop as clinical leaders.
Aims: The aim of this study was to establish baseline data regarding the self-perceived structural and psychological empowerment experienced by New Zealand hospice staff nurses and their ability to practise as clinical leaders.
Methods: An explanatory sequential mixed-methods design was used, which included questionnaires measuring structural and psychological empowerment and clinical leadership behaviours and focus group discussions.
Findings: Survey respondents reported that they were moderately psychologically and sometimes or rarely structurally empowered and felt that they can practise as clinical leaders most of the time. Two themes were identified from the focus groups.
Conclusion: New Zealand staff hospice nurses felt that—despite feeling only moderately psychologically empowered, and only sometimes or rarely structurally empowered—they practise as clinical leaders most of the time.
Cet ouvrage aborde la nécessité de réfléchir ensemble au sens du prendre soin et du fait d'être soigné pour mettre en valeur l'importance d'une implication personnelle de chacun dans la relation en vue de soins de qualité.
[Extrait Résumé éditeur]
Introduction : En France, plus de 618 000 résidents vivent en Établissement pour personnes âgées dépendantes (EHPAD) et plus de 125 000 y décèdent chaque année. Les difficultés éthiques y sont accrues en raison de la polypathologie et des troubles cognitifs. Les prises en charge des résidents en fin de vie ont été l’objet de recommandations de bonnes pratiques. Pourtant, les modalités de mise en oeuvre des soins palliatifs en EHPAD restent peu étudiées.
Objectifs : L’objectif était d’évaluer les pratiques de soins palliatifs en EHPAD.
Méthodes : Quatre Équipes mobiles de soins palliatifs (EMSP) et le Réseau qualité des établissements de santé de Bourgogne-Franche-Comté (REQUA) ont proposé un audit rétrospectif de dossiers dans le cadre d’une Évaluation des pratiques professionnelles (EPP) à 11 EHPAD volontaires de leur région.
Résultats : Dans ces établissements (1 596 places au total), 475 décès étaient survenus l’année précédant le recueil. Un échantillon de 295 dossiers était audité. Dans 91 % des cas les décès étaient survenus au sein des établissements. Parmi les 221 résidents décédés de façon non soudaine, lors de la dernière semaine de vie, 63 % avaient eu au moins une évaluation de la douleur, 47 % une contention (y compris barrières) et 36 % une hydratation artificielle. Dix pour cents des dossiers comportaient la trace d’une information des résidents à propos de leur état de santé. Conclusion : Ce travail identifie des axes d’amélioration des pratiques portant sur la prise en charge des douleurs, l’implication des résidents dans leur propre projet de fin de vie, et la nécessité d’une valorisation institutionnelle de l’interdisciplinarité.
Bien que prévu par la loi et quels qu’en soient les motifs, le refus de soins émanant du patient déstabilise les soignants. Pour ces derniers, il est important de comprendre les attitudes vis-à-vis de ce refus, les liens avec les pratiques professionnelles afin de proposer des repères pour une démarche clinique.
In 2019, the Royal College of Nursing (RCN) and Queen's Nursing Institute (QNI) recognised a significant reduction in the number of qualified district nurses (those who hold the Community Specialist Practitioner (CSP) qualification). Community nursing is an evolving role, and, with the role of community nurse expanding, the role of the CSP in supporting teams to adapt to the development of the role is more important than ever. As a leader, the CSP possesses skills in leadership and co-ordination of the team, alongside specialist knowledge of the provision of nursing care in community settings. This article seeks to explore the hidden practice of verification of expected adult deaths by registered nurses and how the CSP role is integral in developing and embedding this skill within a team.
Traditional Chinese art practices such as brush painting and calligraphy are thought to promote self-development through holistically engaging both physical and mental health. This pilot study investigated the beneficial effects of a community-based self-help group incorporating Chinese art practices as a culturally adapted bereavement intervention. Twenty-six Chinese parents aged over 49 years and who had lost their only child participated in a 20-session Chinese brush painting group over a 6-month period. Ten bereaved parents from the same community who did not participate in the art course but received living support were recruited as a control group. Compared with the control group, the art practice group exhibited a pre-post intervention effect in terms of promoting positive affect and preventing deterioration of prolonged grief symptoms, particularly through the improvement of accessory grief symptoms (e.g., "emotional numbness due to the loss", and "feeling that life is unfulfilling, empty or meaningless after the loss"). No effect was found on negative affect. These findings indicate that a culturally adapted community-based art group may be an effective means of improving grief-related health.
Background: Delirium is a common debilitating complication of advanced cancer.
Objective: To determine if a multicomponent nonpharmacological delirium prevention intervention was feasible for adult patients with advanced cancer, before a phase III (efficacy) trial.
Design: Phase II (feasibility) cluster randomized controlled trial. All sites implemented delirium screening and diagnostic assessment. Strategies within sleep, vision and hearing, hydration, orientation, mobility, and family domains were delivered to enrolled patients at intervention site admission days 1–7. Control sites then implemented the intervention (“waitlist sites”).
Setting: Four Australian palliative care units.
Measurements: The primary outcome was adherence, with an a priori endpoint of at least 60% patients achieving full adherence. Secondary outcomes were interdisciplinary care delivery, delirium measures, and adverse events, analyzed descriptively and inferentially.
Rsults: Sixty-five enrolled patients (25 control, 20 intervention, and 20 waitlist) had 98% delirium screens and 75% diagnostic assessments completed. Nurses (67%), physicians (16%), allied health (8.4%), family (7%), patients (1%), and volunteers (0.5%) delivered the intervention. There was full adherence for 5% patients at intervention sites, partial for 25%. Both full and partial adherence were higher at waitlist sites: 25% and 45%, respectively. One-third of control site patients (32%) became delirious within seven days of admission compared to one-fifth (20%) at both intervention and waitlist sites (p = 0.5). Mean (standard deviation) Delirium Rating Scale-Revised-1998 scores were 16.8 + 12.0 control sites versus 18.4 + 8.2 (p = 0.6) intervention and 18.7 + 7.8 (p = 0.5) waitlist sites. The intervention caused no adverse events.
Conclusion: The intervention requires modification for optimal adherence in a phase III trial.
Background: Recent and preprohibition studies show that patients with serious illness might benefit from psychedelic-assisted therapies for a range of symptoms, physical, psychosocial, and existential.
Objective: To explore the potential roles and research priorities of these therapies in patients with serious illness.
Design, Setting, and Participants: Qualitative study based on semistructured interviews with 17 experts in serious illness care and/or psychedelic research from the United States and Canada.
Measurements: The interview guide elicited participants' perspectives on (1) the potential roles of psychedelic-assisted therapies in this setting, (2) research priorities relevant to this population, and (3) the potential for integrating psychedelic-assisted therapies into existing delivery models of serious illness care. We used thematic analysis until thematic saturation.
Results: Domain I: Participants had polar views on the therapeutic potential of psychedelic-assisted therapies, ranging from strong beliefs in their medical utility to reluctance about their use in this patient population. They shared concerns related to the risks of adverse effects, such as delirium or worsening of psychological distress. Domain II: Research priorities primarily concerned patients with clinically diagnosed psychosocial distress, such as depression, anxiety, or demoralization. Participants also articulated potential roles extending beyond traditional medical diagnosis. Domain III: Participants emphasized essential safety and efficacy guidelines relevant to the integration of these therapies into existing models of care.
Conclusion: This qualitative study highlights issues and priorities for research on psychedelic-assisted therapies in patients with serious illness and proposes a conceptual framework for integrating these therapies into existing delivery models of serious illness care.
Within weeks, COVID-19 has transformed our practice of palliative care and clinical medicine as we know it. Telemedicine has emerged as a critical technology to bring medical care to patients while attempting to reduce the transmission of COVID-19 among patients, families, and clinicians. It is also increasingly necessary to preserve scarce resources like personal protective equipment. In this article, we share just-in-time tips to support palliative care clinicians and program leaders in providing the best care possible by telemedicine. These quick, practical tips cover telemedicine setup, patient considerations, and clinician considerations. Next steps include ensuring equitable access to affordable telemedicine technology for vulnerable populations through creative solutions and financing, and dedicated attention to telemedicine evaluation and quality improvement.
Bibliotherapy is a therapeutic intervention that could potentially be utilized by pediatric palliative care social workers to aid in providing individualized support and adaptive coping techniques through end-of-life and bereavement. Multiple modalities of implementing bibliotherapy are considered, including applications in individual and group counseling. An institutionally supported bibliotherapy program that aims to provide therapeutic and recreational texts for patients, families and clinicians is described. Suggested guidelines and book titles for use in practice with bereaved siblings and families are provided alongside targeted description for use in clinical practice.
Objectifs : Une approche clinique globale et analytique, prenant en compte des causes multifactorielles, s’avère nécessaire pour comprendre et traiter les douleurs complexes et réfractaires liées au cancer. Un guide a été élaboré afin d’aider le praticien dans son raisonnement clinique. Il associe quatre approches : sémiologique, physiopathologique, anatomique et fonctionnelle. Ainsi, l’objectif principal de cette étude était d’évaluer la faisabilité d’utilisation de ce guide par des médecins d’unités de soins palliatifs. Les objectifs secondaires étaient de connaître les résultats de ces approches combinées et d’observer les modifications des coanalgésies médicamenteuses et si possible les approches multimodales.
Méthode : Cette étude de faisabilité était interventionnelle, non thérapeutique, et multicentrique sur les cinq unités de soins palliatifs d’Aquitaine. Dans un travail préliminaire, le guide de raisonnement clinique a été élaboré par six médecins puis soumis à la lecture critique de huit autres médecins par entretien et enfin par questionnaire. L’étude s’est déroulée auprès de sept médecins de quatre unités de soins palliatifs, tous expérimentés et diplômés en soins palliatifs. Un questionnaire remis aux médecins portait sur l’évaluation critique de l’utilisation du recueil : son utilité, ses avantages, ses limites, ses conditions d’utilisation.
Résultats : Sept médecins ont participé à l’étude. Parmi eux, quatre ont dit utiliser un raisonnement clinique auparavant. Six ont jugé le guide utile pour étudier les éléments manquants à l’évaluation et mieux soulager. Cinq ont estimé qu’il pourrait être généralisé dans les unités de soins palliatifs, deux qu’il pourrait être intégré au dossier dès l’admission du patient. Pour deux, le manque de temps pouvaitt être un frein à sa faisabilité. Soixante-huit patients ont été inclus, représentant 84 cas de douleur (59 % nociceptives, 35 % mixtes et 6 % neuropathiques). Parmi les douleurs évaluées, 19 comprenaient une composante neuropathique (DN4 positif). La coanalgésie a été modifiée pour tous les patients dans les 24h suivant l’admission.
Discussion : Pour la plupart des médecins interrogés, le guide est utile et faisable. Le manque de disponibilité, les besoins d’intégration des approches biomédicale et psychorelationnelle, d’appropriation du guide par un apprentissage et un compagnonnage ont été relevés par certains répondants.
Conclusion : L’évaluation de ce guide doit être poursuivie, notamment en médecine générale et en gériatrie. Son impact sur la prise en charge des douleurs liées au cancer est également à étudier.
Qui ne souhaite pas être ou n’est pas, réfléchi dans ses pratiques, pondéré, sage, lucide ? Un praticien réflexif est sans aucun doute réfléchi, mais il est plus que cela, il est en plus désireux et capable de se prendre pour objet de sa réflexion dans la visée d’améliorer ses pratiques. Cette situation engage ces acteurs à se documenter, s’informer, chercher, inventer, tester, lire, écouter… La connaissance se construit, se re-construit et trouve du sens au travers des partages expérientiels, des ressources documentaires, des mises en œuvre et des échanges.