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.
Background: When patients receiving palliative care are transferred between care settings, adequate collaboration and information exchange between health care professionals is necessary to ensure continuity, efficiency and safety of care. Several studies identified deficits in communication and information exchange between care settings. Aim of this study was to get insight in the quality of collaboration and information exchange in palliative care from the perspectives of nurses.
Methods: We performed a cross-sectional regional survey study among nurses working in different care settings. Nurses were approached via professional networks and media. Respondents were asked questions about collaboration in palliative care in general and about their last deceased patient. Potential associations between quality scores for collaboration and information handovers and characteristics of respondents or patients were tested with Pearson’s chi-square test.
Results: A total of 933 nurses filled in the questionnaire. Nurses working in nursing homes were least positive about inter-organizational collaboration. Forty-six per cent of all nurses had actively searched for such collaboration in the last year. For their last deceased patient, 10% of all nurses had not received the information handover in time, 33% missed information they needed. An adequate information handover was positively associated with timeliness and completeness of the information and the patient being well-informed, not with procedural characteristics.
Conclusion: Nurses report that collaboration between care settings and information exchange in palliative care is suboptimal. This study suggests that health care organizations should give more attention to shared professionalization towards inter-organizational collaboration among nurses in order to facilitate high-quality palliative care.
Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP).
Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers.
Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity.
Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes.
Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/vN) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values.
Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03).
Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.
Interprofessional education allows students to collaborate with students and professionals of multiple disciplines. An Interdisciplinary Palliative Care (IPC) Seminar, held in the Midwest, involves students from disciplines of medicine, nursing, pharmacy, social work, and chaplaincy. The curriculum of the seminar incorporates asynchronous and synchronous didactic presentations, experiential learning through group exercises and discussion, along with home visits by students in interdisciplinary dyads. The purpose of this study was to determine whether students’ participation in a 3-week IPC seminar would positively influence their socialization and value of interprofessional collaboration with the ultimate goal of developing skilled professionals who engage in interprofessional practice in hospice and palliative care settings. This descriptive study invited participants to take a pre- and postseminar online survey using the Interprofessional Socialization and Valuing Scale-21 (ISVS-21) to assess shifts in students’ perceptions of interprofessional socialization and the value of collaborative health-care practice. In their pre-and postseminar scores, 71 participants reported they more strongly agreed with all items on the ISVS-21 after completing the seminar. The results from this study suggest the IPC Seminar is an effective educational model for advancing the value of interprofessional socialization and collaborative practice in hospice and palliative health-care.
OBJECTIVES: Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences.
METHODS: Action research was used to explore the potential for hospices to work with schools and engage participants in change processes. The research was conducted in 1 hospice and 2 primary schools in Scotland. Participants included children, parents and school and hospice staff.
RESULTS: Seven innovations were identified that were found to be useful for the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested.
CONCLUSIONS: This research adds to knowledge about how hospices might engage in community engagement activities that encourage school staff to develop greater openness and support around end-of-life and bereavement care for their children. This will require a rethinking of normal hospice services to also participate in community capacity building.
L’intervention des équipes mobiles de soins palliatifs, le plus souvent sollicitée par le médecin traitant, est essentielle pour accompagner et soutenir les professionnels et les patients. Anticipation, coopération et coordination sont les clés du succès.
La recherche en santé autochtone au Canada a été négligée dans le passé et qualifiée de problématique, notamment en raison du manque de collaboration avec les peuples autochtones. L'Énoncé de politique des trois Conseils sur l'éthique de la recherche avec des êtres humains décrit au chapitre 9 la conduite éthique de la recherche axée sur les Premières nations, les Inuits et les Métis. Les principes PCAP® des Premières nations (propriété, contrôle, accès et possession) soulignent l'importance majeure de l'engagement et de la gouvernance autochtones. En vue d'assurer que les buts et les activités de la recherche développée soient réalisés en partenariat complet et significatif avec les peuples et les communautés autochtones, il est possible de faire appel à des méthodes de recherche participative communautaire (RPC) intégrant leur plein engagement. Les recherches utilisant des ensembles de données secondaires, telles que les données administratives sur la santé recueillies en routine, ne devraient plus être exclues de cette approche. Notre objectif était de décrire comment notre équipe de chercheurs universitaires, alliée à un organisme national de santé autochtone, a adapté les méthodes de RPC dans le cadre d'un projet de recherche utilisant des données recueillies antérieurement pour examiner les lacunes dans la prestation de soins de fin de vie aux peuples autochtones en Ontario. Nous décrivons le processus d'élaboration de ce partenariat de recherche et expliquons comment l'intégration des principes de base et des processus de formation du savoir autochtones ont guidé cette collaboration. Notre partenariat de recherche, qui implique l'adaptation de méthodes de RPC, illustre un processus d'engagement qui pourrait guider d'autres chercheurs désirant mener des recherches en santé autochtone à l'aide de données déjà recueillies. Nous faisons aussi état d'une entente de recherche transparente, négociée équitablement entre un organisme national de santé autochtone et des chercheurs, qui pourrait servir de cadre pour des collaborations de recherche similaires. Il est essentiel de s'assurer que les perspectives autochtones soient au cœur des processus de recherche et qu'elles soient reflétées dans ceux-ci lorsque des données administratives sur la santé sont utilisées.
Cet article fait le bilan de plusieurs années de collaboration entre un établissement médicoéducatif et une équipe ressource régionale de soins palliatifs. Il décrit les évidences à la rencontre de ces deux équipes, l’une issue du « monde » médicosocial, l’autre du « monde » sanitaire. Par nature, le polyhandicap, et l’extrême fragilité médicale qui en découle, nécessitent que le projet personnalisé des enfants accueillis dans ce type d’établissement prenne en compte leurs besoins de santé. Aussi, la collaboration avec l’équipe ressource régionale de soins palliatifs est devenue un outil de travail intéressant pour l’établissement, avec des répercussions en termes de culture d’établissement, d’accompagnement familial et d’accueil des enfants. Au-delà de ces évidences, le lien « ville – hôpital » devient une réalité au bénéfice des enfants accueillis.
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.
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BACKGROUND: International evidence on the outcome of generalist versus specialist palliative care provision in palliative care trajectories is limited and varied. In general, intervention studies can influence the organisation of palliative care practice and professional collaborations. However, randomised clinical trials in palliative care rarely consider the organisational significance of the studies, as experienced by the professionals involved. DOMUS is the abbreviation for a Danish intervention study designed as a randomised clinical trial, investigating an accelerated transition from oncological to specialist palliative care at home for patients with incurable cancer. Alongside conducting the palliative care intervention study, we wanted to discover the perspectives of the healthcare professionals involved.
AIM: To explore the organisational significance of the DOMUS intervention study as experienced by the professionals involved.
DESIGN: A qualitative interview study, using thematic content analysis and inspired by organisational theory.
SETTING/PARTICIPANTS: Thirty-eight professionals from four units involved in the DOMUS intervention study took part in 10 groups and six individual interviews.
RESULTS: The DOMUS randomised clinical trial intervention influenced and sometimes disrupted both the ways of organising, collaborating and practising palliative care, and patients' and relatives' understanding of their own situation. It did this by (1) referring a broader palliative care target group to specialist palliative care, leading to (2) different palliative care needs, professional tasks, and perceived impact on (3) the organisation of palliative care and (4) professional collaboration.
CONCLUSION: Professionals involved in the DOMUS palliative care intervention found that the study had organisational significance, with an influence on professionals, patients and relatives. Specialist palliative care in Denmark is devoted organisationally and professionally to patients with severe or complex palliative care needs. Hence, new ways of organising palliative care for people in the earlier stages of their disease are needed.
Experience-based design, co-design, and experience-based co-design can be used within healthcare to design services that improve the patient, carer and staff experience of the services. As palliative and end-of-life care centrally value person-centred care, we believe that service designers, commissioners and those tasked with making quality improvements will be interested in this growing field. This paper outlines these approaches-with a particular emphasis on experience-based co-design-and describes how they are and can be used within palliative and end-of-life care. Based on a rapid review and several case studies, this article highlights the key lessons learnt from previous projects using these approaches and discusses areas for improvement in current reporting of service design projects.
Palliative care (PC) teams are primed to support patients with advanced illness, including patients with mechanical circulatory support (MCS), and are increasingly being called upon to help care for these patients. Detailed guidelines for PC engagement are lacking despite key stakeholders' endorsements of collaboration. PC should encompass the decision-making period, the duration of therapy, and end-of-life care. PC teams can assist with symptom management, advance care planning, and communication across the continuum of MCS care. However, the current state of MCS and PC collaboration is variable and can be hindered by staffing challenges and clinician discomfort. To best care for patients who receive advanced cardiopulmonary life-sustaining therapies, meaningful engagement of PC during all phases of MCS is essential.
The care philosophy of palliative care has demonstrated a rapid growth in the past several years (Dumanovsky et al., 2016). Home care agencies and hospital systems have collaborated on reducing excessive costs and focusing on the effective management of patients with late-stage chronic desease .
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Context: Governments intend to meet resource constraints in professional palliative care by stimulating informal care, including volunteerism. However, little is known about current volunteer-professional collaboration. Such insights are relevant for future policy development regarding volunteer efficiency, quality of care and the capacity of volunteer care to support healthcare services and professionals.
Objectives: To explore what constitutes volunteer-professional collaboration around palliative care.
Methods: A qualitative study was conducted using semi-structured focus groups with volunteers, nurses, psychologists and family physicians and semi-structured interviews with people with serious illnesses and with family carers. Participants were recruited from hospital, home-care, day-care and live-in services in Flanders, Belgium. Interviews and focus groups were audio-recorded, transcribed verbatim and analysed employing a phenomenological approach. Two researchers coded independently in NVIVO 11 and reached a definitive coding scheme by comparing their resulting conceptual schemes.
Results: Seventy-nine people participated in the study. Volunteers collaborate mostly with nurses, less with psychologists but not with physicians. Volunteer-professional collaboration entails mutual information-sharing regarding patient conditions and coordination of care provision, while nurses and psychologists provide emotional and functional support for volunteers. Lack of access to nurses, of leadership and of patient-information sharing guidelines were the most prominent barriers to collaboration.
Conclusion: Volunteers are in the front line of palliative care provision and therefore collaborate intensely with nurses, particularly in dedicated palliative care services. However, collaboration with other professionals is limited. The presence and availability of nurses was found to be crucial for volunteers, both for support and to achieve integration through collaboration.
Interest in the potential for public health and palliative care to work together is now widely established. Based on a mapping review of existing literature, we describe for the first time the ways in which public health has entered palliative care policy and practice and how this has been specifically articulated. We then go on to pursue analytical and critical lines of enquiry that are largely absent from the existing literature. We do this in three ways: (i) by considering why the link between public health and palliative care has become so ubiquitous within palliative care policy; (ii) by establishing how this has been constructed; and (iii) by exploring public health as a 'reference discipline' from which its 'secondary deployment' can become embedded inside another disciplinary field. From this, we develop a range of critical perspectives on the relationship between public health and palliative care by scrutinising its claims of utility and effectiveness and questioning the strength of the interdisciplinary interaction between the two disciplines. We see their relationship in a 'cross disciplinary' context which is still largely symbolic and tactical in nature. We conclude by considering the significance of these insights for policy and practice, with two possible scenarios. If the use of public health is essentially figurative and its resources are not unique, the particular and exclusive use of the term becomes insignificant. Progressive and effective policy and practice is possible, independent of any explicit public health label. If however public health is considered to have intrinsic and definable worth, we suggest that this currently asymmetrical association needs to be significantly developed with much higher levels of theoretical, practical and critical engagement between the two disciplines. Such work would result in more reflective and robust policy and practice.
Music is one of the things in my life that has most reliably gotten me into and kept me out of trouble. Having played in bands for decades, I see parallels with the practice of medicine. As a hospitalist and a palliative care pediatrician, I would like to apply lessons from music to consider how general palliative care (provided by all clinicians) and specialty palliative care (provided by board-certified physicians) can work together in harmony. Music (like medicine) thrives through collaboration, benefits from specialized knowledge, and begs to be shared.
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PURPOSE: The purpose of the study was to evaluate the impact on pain management by multidisciplinary palliative care team (mPCT) and the team pharmacist.
METHODS: Patients who were admitted to palliative care unit (PCU) for at least 7 days between April 2014 and December 2015 were included. The mPCT consisted of a physician, a pharmacist, nurses, and non-clinical support staff. The team was on charge of pain management of patients who were admitted to PCU. Pain intensity was assessed at 3 time points in each patient; 1 week before PCU admission (day -7), on the day of admission (day 0), and 1 week after admission (day 7) using 0 to 10 numerical rating scale (NRS). Analgesic use was evaluated with 6 categories based on National Comprehensive Cancer Network and Korean pain management guidelines. Pain intensity and analgesic use appropriateness were compared at day -7, day 0, and day 7 for the patients who were admitted to the PCU.
RESULTS: Pain intensity decreased significantly on day 7 of PCU admission compared to it on day 0 (NRS: 4.05 vs 2.66, P < .001). A significant negative correlation was found between pain intensity and the proper use of analgesics ( r = -0.407; P < .001, r = -0.309; P = .001, r = -0.241; P = .009, on day -7, day 0, day 7, respectively).
CONCLUSION: The mPCT contributed to the reduction of inappropriate use of analgesics and improved pain control. Pharmacist intervention appeared to have improved pain control in patients under palliative care. Each team member's role should be individualized and developed further.
BACKGROUND: The American College of Emergency Physicians has identified early palliative care referral for patients with advanced cancer as a key competent of the Choosing Wisely campaign.
OBJECTIVES: To study the feasibility of a new 3-way model of care between emergency department (ED), hospital palliative care department, and inpatient/home hospice.
METHODS: This was a prospective, descriptive study that included oncology patients who attended the hospital ED over a 3-year period from January 2015 to December 2017. The inclusion criteria were as follows: (1) presence of metastatic cancer with either; (2) any 1 of the following symptoms: pain, dyspnea, nausea and vomiting, delirium, or swelling; or (3) potential care difficulties (requiring home hospice care or inpatient hospice).
RESULTS: A total of 340 patients were referred from the ED. Mean age was 72 years, 59% were males and 41% females, and the majority (88%) were Chinese. The most common cancers were lung 89 (26%), colorectal 71 (21%), and hepatobiliary cancer 49 (14%). The most common symptoms on Edmonton Symptom Assessment Scale scoring were pain (34%), poor appetite (31%), and dyspnea (26%).
CONCLUSIONS: This tripartite model of palliative care, hospice, and ED collaboration allows earlier access to palliative care in the ED and direct admissions to the palliative care unit and comfort care rooms. The ED patients who did not need admission were also attended to in the palliative care "Hot Clinics" within a week with home hospice help. Patients who required inpatient hospice care were directly admitted there from the ED.