This study aimed to investigate actual situations of nursing activities in supporting the transition to homecare settings for end-stage cancer patients and to determine factors related to executing such nursing activities from the perspectives of communication skills and interprofessional collaboration. A cross-sectional study was conducted with 513 nurses who worked at designated cancer care hospitals in Japan. A total of 318 valid responses were obtained (valid response rate: 62.0%). Scores for nursing activities were higher for the following items: sharing information regarding the transition to homecare settings, intentionally engaging with patients after their medical conditions were explained, providing care for families, and understanding a patient's will about the transition to homecare settings. On the other hand, scores were lower for items that were related to guiding juniors and self-improvement. A multiple regression analysis was performed with nursing activities as the dependent variable. 8 factors related to nursing activities were determined: experience in supporting the transition to homecare settings as a primary nurse, contribution to a team (Team Approach Assessment Scale [TAAS]), years of nursing experience, function of a team (TAAS), regulation of interpersonal relationship (ENDCOREs communication skills scale), experience of participation in homecare nursing education or seminars, verbal communication skills for good communication (End-of-life Care Nurses’ Communication Skills scale), and educational background. Future challenges include developing an educational program based on the results of the present study and promoting educational intervention studies.
Background: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life.
Methods: Oncology patients (ages 0–25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015–06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017–06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared.
Results: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084).
Conclusion: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.
Background: Transitioning from the hospital to community is a vulnerable point in patients' care trajectory, yet little is known about this experience within the context of palliative care. While some studies have examined the patient and caregiver experience, no study to date has synthesized the literature on the healthcare provider's perspective on their role and experience facilitating these transitions.
Aim: The purpose of this systematic review was to understand the experience and perspective of healthcare providers who support the transition of patients receiving palliative care as they move from acute care to community settings.
Design: A qualitative systematic review of studies using thematic analysis as outlined by Thomas and Harden. PROSPERO: ID # CRD42018109662.
Data sources: We searched four databases: MEDLINE, Embase, ProQuest and CINAHL for studies published in English from 1995 until May 22, 2020. Four reviewers screened records using the following selection criteria: (1) peer-reviewed empirical study, (2) adult sample, (3) qualitative study design, (4) perspective of healthcare providers, and (5) included a component of transitions between acute to community-based palliative care. Study findings were analyzed using thematic analysis which entailed: (1) grouping the findings into recurring themes; (2) iteratively referring back to the articles to obtain nuances of the theme and quotations; and (3) defining and solidifying the themes.
Results: Overall 1,791 studies were identified and 15 met inclusion criteria. Studies were published recently (>2015, n = 12, 80%) and used a range of qualitative methods including semi-structured interviews, focus groups, and field interviews. Three core themes related to the role and experience of healthcare providers were identified: (1) assessing and preparing for transition; (2) organizing and facilitating the logistics of transition; and (3) coordinating and collaborating transitional care across sectors. The majority of studies focused on the discharge process from acute care; there was a lack of studies exploring the experiences of healthcare providers in the community who receive patients from acute care and provide them with palliative care at home.
Conclusion: This review identified studies from a range of relatively high-income countries that included a diverse sample of healthcare providers. The results indicate that healthcare providers experience multiple complex roles during the transition facilitation process, and future research should examine how to better assist clinicians in supporting these transitions within the context of palliative care provision.
Objectives: To discuss the outcomes of a formalized care transition process for palliative care patients from the hospital to the community.
Background: Patients who received inpatient palliative care services from the specialist palliative care team in the hospital or who were identified as needing community palliative care services have inadequate support on discharge.
Methods: A retrospective review of the medical records of patients admitted to the community based palliative care (CBPC) program, Arizona Palliative Home Care (AZPHC) over a 12-month period (June 2018 to May 2019) was undertaken with a focus on the frequency and pattern of hospital events pre- and postadmission to the program. Patient/family satisfaction data obtained from telephone surveys were evaluated. The medical records from patients (n = 294) with advanced complex illnesses who were admitted to AZPHC from the five Honor Health Network hospitals were included in this study.
Results: Of the 294 patients' records reviewed, 80% were in the 65 and older age group and had a mean length of stay on AZPHC of [about] 40 days. Comparing acute care utilization pre and post AZPHC admission, there was a reduction of 68.95% at 60 days and 68.22% at 90 days. In addition, 128 avoided hospital events were recorded, and 86% of patients were very likely to recommend AZPHC to family or friends.
Discussion: Collaboration between a hospital palliative care team and a CBPC program resulted in high quality transitions across care settings and reduction in acute care utilization.
CONTEXT: Inadequate handovers between hospital and home can lead to adverse health outcomes. A group particularly at risk are patients at the end of life because of complex health problems, frequent care transitions and involvement of many professionals.
OBJECTIVES: To investigate healthcare providers' views and experiences with regard to the transition from hospital to primary care in palliative care.
METHODS: This was a descriptive qualitative study. Three focus group discussions were held with 28 nurses and two focus groups with nine physicians. Participants were recruited from primary and hospital care. The focus groups were audio-recorded, transcribed verbatim and analysed thematically.
RESULTS: The following themes emerged from the data: (1) lack of identification of and communication about the last phase of life; (2) incomplete and insufficient handover; and (3) uncertainty about responsibilities. Professionals emphasize the importance of proper handovers and transitional processes in these vulnerable patients. The transition between hospital to primary care is hindered by a lack of identification of the palliative phase and uncertainties about patient awareness. Direct communication between professionals is needed but lacking. The handover itself is currently primarily focussed on physical aspects where psychosocial aspects were also found necessary. Furthermore, uncertainties with regard to physicians' responsibility for the patient seem to further hinder professionals in the transitional process.
CONCLUSION: Efforts should be made to enhance knowledge and skills around identification of palliative needs and communication with patients about the end of life, especially in the hospital setting.
BACKGROUND: While most patients desire to die at home or in a community-based hospice, the transition from hospital to community settings often lacks streamlined coordination of care to ensure that adequate support is provided in the preferred care setting. The impact of hospital-based palliative care consultations on post-discharge care and outcomes has not been extensively studied.
AIM: The aim of this study was to appraise available research on the impact of inpatient palliative care consultations on transitions from hospital to community settings.
DESIGN: We conducted a narrative systematic review and used the Effective Public Health Practice Project tool to appraise the quality of selected studies. Studies were included if they assessed the transition from hospital to community and examined outcomes after an inpatient palliative care consultation. A protocol for this study was registered and published in PROSPERO, Centre for Reviews and Dissemination (ID: CRD42018094924).
DATA SOURCES: We searched for quantitative studies indexed in PubMED, CINAHL and Cochrane and published between 1 January 1 2000 and 11 March 2018.
RESULTS: Our search retrieved 2749 articles. From these, 123 articles were full-text screened and 15 studies met our inclusion criteria. Studies reported that inpatient palliative care consultations are associated with high rates of discharge to community settings, greater provision of services post-discharge, improved coordination and lower rates of rehospitalization.
CONCLUSION: Existing evidence suggest that inpatient palliative care consultations have a positive impact on patient outcomes and transitions to the community, demonstrating the potential to improve patient quality of life and relieve overburdened acute care systems.
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.
Les importantes évolutions démographiques et sociétales demandent que les soins palliatifs se développent au domicile des personnes malades. Les équipes mobiles, mal réparties sur le territoire, soutiennent la nécessité pour l'hôpital de se tourner vers la ville (HAD) et de participer à la coordination des soins. Celle-ci mobilise de nombreuses ressources et le médecin traitant y tient une place centrale. (R.A.).
Origine : BDSP. Notice produite par APHPDOC A9rkHR0x. Diffusion soumise à autorisation
BACKGROUND: Supportive care in cancer (SCC) have been recommended to be integrated in the management of patients with lung cancer all along the course of the disease. We took advantage of a pilot program of early implementation of optimized SCC, to report the feasibility such program in patients with advanced lung cancer, and correlate patient characteristics and outcomes with the actual use of optimized SCC.
METHODS: This study is a retrospective analysis of all consecutive patients with lung cancer treated at our center between 2012 and 2016. Optimized SCC included the intervention of a nurse for the home-hospital network coordination, as well as socio-aesthetics, psychomotricity, art-therapy, adapted physical activity, and also establishment of at-home hospitalization.
RESULTS: 309 patients were included. Median overall survival was 11.2 months. Unplanned hospitalizations occurred for 276 (89%) patients. The median duration of hospital stay was 19 days. Unplanned hospitalizations more frequently occurred within the first 3 months after the diagnosis of advanced cancer, and in the last 3 months before death. A short – less than 3 months – delay between diagnosis and unplanned hospitalization was associated with poor outcome. 272 (88%) patients received optimized SCC, within a median delay of 8 weeks after diagnosis. Intervention of the nurse for in- and out-patient network coordination was done for 143 (46%) patients, and at-home hospitalization was organized for 78 (25%) patients. The outcome of patients who received optimized SCC was numerically, but not significantly better (median overall survival of 11.8 vs. 6.9 months, p = 0.270).
CONCLUSION: Our study provides landmark data to support an early integration of optimized SCC for patients with advanced lung cancer, that includes multimodal supportive care interventions along the course of the disease. This highlights the role of multidisciplinary teams to optimize the management of patients with advanced lung cancer.
Introduction: Choisir de mourir chez soi est une décision complexe et mobilise de nombreux acteurs de soins. Dans la continuité du Plan triennal 2015–2018 qui consacre un axe d’intervention au déploiement des soins palliatifs à domicile, l’équipe mobile de soins palliatifs (EMSP) stéphanoise souhaite intensifier le soutien aux soignants et aux aidants en ville. Cet article a pour objectif de mettre en évidence l’intérêt de développer une activité à domicile auprès des patients et des professionnels de santé de ville.
Méthodes: Étude préliminaire, qualitative, observationnelle de 3 EMSP de la région Auvergne-Rhône-Alpes, de leurs actions à domicile et d’un choix de consultations marquantes.
Résultats: Sur l’ensemble des interventions physiques, le domicile représente entre 14 % et 25 % de l’activité des EMSP1&2. L’EMSP3 a réalisé 313 visites en 2016. Ces équipes sollicitées par les hôpitaux et les médecins traitants interviennent pour des problèmes éthiques, de douleur, ou autres symptômes d’inconfort, pour un soutien psychologique du patient, des aidants, ou des soignants libéraux, pour un besoin social ou une évaluation globale et pluridisciplinaire.
Conclusion: L’EMSP joue un rôle interstitiel fondamental cimentant un bricolage d’acteurs multiples, motivés, mais parfois aussi souffrants ou maladroits autour d’un malade en fin de vie à domicile. Véritable soutien pour le médecin généraliste et maillon entre la ville et l’hôpital, elle essaye de respecter l’intimité des familles, les choix des patients et le professionnalisme des soignants. Ces consultations complexes demandent du temps, de la disponibilité, de l’expérience, et exigent une approche transdisciplinaire.
AIMS AND OBJECTIVES: To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom.
BACKGROUND: In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable.
DESIGN: This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology.
METHODS: Data collection was carried out in 2013. Interviews took place with parents (n = 5) and focus groups with professionals (n = 26) who had experience of step-down care.
RESULTS: Multiple benefits of step-down in the hospice were clear. Both sets of accounts suggested that for children and families life was "on hold" in hospital. Hospice was considered a home-like environment where the child and family could "live again". Parents reflected that, in hospice they were "living, not existing" while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs.
CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home.
BACKGROUND: Although continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it's implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs' missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014.
METHODS: Thematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation.
RESULTS: Between 2010 and 2014, 3607 children and young adults (0-21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found.
CONCLUSION: PLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.
The hospital-to-home transition in palliative care is a vital process that requires continuity of care through the discharge process. However, little is known about the perceptions of patients with cancer and their family caregivers during this important palliative care transition in the Colombian health care context. The purpose of this study was to explore the experiences of the patient-family caregiver dyad in palliative care during the transition process between hospital and home in a health care institution in Bogota, Colombia. Using a grounded constructivist theory design, 30 patients with cancer receiving palliative care and 30 family caregivers participated in this study. The data were collected through 36 dyad interviews conducted in either the hospital or home of the participants. For the analysis, the constructivist analytical method was used. Findings revealed that “Looking for control at the end of life through the bond” was the main category of the study. This category could be further elaborated into 4 categories: (1) yearning for home; (2) recognizing burden; (3) experiencing uncertainty, a lack of control; and (4) achieving control. By understanding the patient and family caregiver perspective of care during the hospital-to-home transition, health care systems have the possibility to implement care programs in palliative care with an innovative educational component for health care professionals.
OBJECTIVES: The jurisdictional nature of routinely collected health data in Australia has created challenges for linking data across state/territory and federal government boundaries. This has impeded understanding of the interplay between service use across hospital and community care. Our objective was to demonstrate the value-add of cross-jurisdictional data using a case study of health service use and the factors associated with healthcare use towards the end of life.
STUDY TYPE: Retrospective cohort study using routinely collected health data.
METHODS: We used two decedent cohorts of people aged =65 years who died in New South Wales (NSW), Australia, in 2006 or 2007. The population cohort comprised the general NSW population linked to NSW data collections; the other cohort comprised Australian Government Department of Veterans' Affairs (DVA) clients (with full healthcare entitlements) linked to NSW and Commonwealth data. We compared information available on health services received during the last 6 months of life and ran multivariable analyses for both cohorts to demonstrate the added value of the Commonwealth data.
RESULTS: We included 37 567 decedents in the population cohort and 11 259 in the DVA cohort. Cancer was the cause of death for 27% of the NSW cohort and 22% of the DVA cohort; approximately 40% of decedents in each cohort had a cancer history. We summarise information on hospital services for both cohorts and examine community care (general practitioner consultations, specialist presentations, prescriptions dispensed) for the DVA cohort only. Multivariable analyses in the DVA cohort demonstrated that high rates of emergency department (ED) presentations and hospitalisation were associated with higher rates of use of all health services, including community care. Use of primary care did not reduce ED or hospital use. We were not able to examine the interplay between community and hospital care in the NSW population cohort.
CONCLUSIONS: In our case study, we demonstrated the value-add of Commonwealth data for understanding the drivers of hospital services use, which has implications for service delivery and resource allocation. There is an abundance of routinely collected health data in Australia that can be used to describe whole-of-healthcare use for a broad range of issues.
Background: The prevalence of dementia is rising globally. Many patients suffer from the burdensome complications of advanced dementia as they are still poorly addressed.
Aims: To describe the development of an interdisciplinary palliative homecare program for patients with advanced dementia and to develop a workflow that delineates the seamless continuation of care between the hospital and community with the homecare program.
Design: Palliative care needs of patients and caregivers were established through a qualitative review of the literature. Appraisal tools were chosen based on their validity and feasibility in the homecare setting. Gaps in the healthcare system were identified and addressed as part of the integration of care between the hospital and the community.
Setting/participants: Patients at Functional Assessment Staging (FAST) 7 with pneumonia, albumin level <35 g/L and/or enteral feeding were enrolled from a tertiary care hospital into the homecare program.
Results: Patients’ symptom burden and quality of life were assessed. Caregivers were engaged in the planning of patients’ care. With the homecare program, patients and caregivers received support at home. Two physicians, seven nurses, and three social work professionals were educated about advanced dementia palliative care and medical information was communicated between different healthcare sites. Preliminary analysis of 306 patients revealed the presence of pain and neuropsychiatric behaviors. Impact of caregiving was mild to moderately severe.
Conclusion: Advanced dementia is under-recognized as a terminal illness requiring specialized palliative intervention. Integrating a homecare palliative program into advanced dementia care is the first step towards palliating suffering at the end-of-life.
BACKGROUND: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home.
METHODS: The Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children’s hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which =20% of participants responded with ‘totally disagree/disagree’ and =80% responded with ‘agree/totally agree’ were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions.
RESULTS: Reported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT.
CONCLUSION: Positive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.
We used a standardized terminology to describe patient problems and the nursing care provided in a pilot study of a transitional palliative care intervention with patients and caregivers. Narrative phrases of a nurse's documentation were mapped to the Omaha System (problem, intervention, and target). Over the course of the intervention, 109 notes (1473 phrases) were documented for 9 adults discharged home (mean age, 68 years; mean number of morbid conditions, 7.1; mean number of medications, 15.4). Thirty-one of the 42 Omaha System problems were identified; the average number of problems per patient was 13. Phrases were mapped to all 4 problem domains (environmental, 2.6%; health-related behaviors, 52.3%; physiological, 30.8%; and psychosocial, 14.3%). Surveillance phrases were the most frequent (72.4%); case management phrases were at 20.9%, and teaching, guidance, and counseling phrases were at 6.7%. The number of problems documented per patient correlated with the time between the first and last notes ( = 0.76; P = .02) but not with the number of notes per patient ( = 0.51; P = .16). These results are the first to describe nursing interventions in transitioning palliative care from hospital to home with a standardized terminology. Linking interventions to patient problems is critical for describing effective strategies in transitioning palliative care from hospital to home.
Brian Ng, Zafar Iqbal and Marilyn Browne discuss a pilot study that assessed how current practices regarding information transfer and advance care planning in end-of-life care in the UK measure up to the guidance recommended by the National Institute for Health and Care Excellence.
L'auteure aborde la problématique liée à la collaboration ville-hôpital et a travaillé sur l'hypthèse suivante : la mise en place de supports ciblés d'information et de communication entre les professionnels hospitaliers et libéraux favorise l'accueil direct en lits identifiés de soins palliatifs des patients en fin de vie. Une étude de recherche-action a été réalisée.
En raison de plusieurs biais statistiques, l’analyse de l'étude n’a montré qu’une légère significativité de l’amélioration de la collaboration entre les professionnels libéraux et hospitaliers, suite à la mise en place d'outils de communication. L’utilisation de la permanence téléphonique par les professionnels libéraux est par contre opérationnelle et a déjà permis d’organiser, de façon plus importante qu’avant, des accueils directs en LISP.
[Extraits de la problématique et du résumé]