Hospice interdisciplinary teams (IDTs) are required to meet regularly to update care plans for terminally ill patients and their family caregivers. Although providers see value in these meetings, they also experience frustration over meeting inefficiencies and communication challenges. The current article presents ENVISION, a tool designed to improve communication in hospice IDT meetings by providing attendees with access to up-to-date patient and family data to inform clinical decision making. In the current qualitative descriptive study, researchers explored the perspectives of hospice providers (n = 21) and family caregivers (n = 10) regarding ENVISION's usefulness and ease of use. Numerous factors influenced participants' perceptions of the tool as useful, including its impact on task efficiency, effectiveness, and difficulty. Perceptions of ENVISION's ease of use focused on ease of learning, operating, and interpreting data the tool provided. Findings suggest ENVISION would benefit hospice nurses in care management and senior leadership positions. [Journal of Gerontological Nursing, 46(7), 9-14.].
The complexities surrounding the dying process may distort rational decision-making and impact care at the end of life. Advance care planning, which focuses on identifying the individual's definition of quality of life, holds great potential to provide clarity at the end of life. Currently, young adults are not the intended audience for advance care planning. A quality improvement project engaged 36 college-age adults in structured group advance care planning discussions and evaluated the perceived value of a self-recorded advance directive. Findings from a pre- and postintervention survey suggested that young adults welcomed a conversation about end-of-life care; they wished for more information and expressed that a video-recorded advance directive stimulated thoughts about their own definition of quality of life. Participants' improved self-perception of comfort, confidence, certainty, and knowledge regarding the advance care planning process and end-of-life care indicated young adults may be a willing and eager population for the expansion of advance care planning. In addition to directing advance care planning to a younger audience, a personal video-recorded advance directive may complement the current advance care planning process and aid individuals in defining their quality of life.
Les médias sociaux sont aujourd’hui incontournables dans nos vies. En France, ils entrent doucement dans nos vies professionnelles. Grâce à eux, il est possible d’informer, de s’informer, de prendre conseil auprès de ses pairs rapidement. Ils offrent aussi un moyen de soutien supplémentaire pour les patients et leurs proches. Cet article vise à dépeindre les différents usages que permettent les médias sociaux dans le monde de soins palliatifs. À l’aide de plusieurs exemples, nous montrerons comment les médias sociaux sont utilisés pour communiquer sur les sujets, parfois complexes, de la fin de vie. Nous décrirons également les usages pratiqués dans d’autres milieux professionnels et outre-Atlantique afin d’envisager comment les médias sociaux pourraient être utilisés dans le milieu des soins palliatifs à l’avenir.
Thanks to the efforts of many individuals and organizations, the field of Hospice and Palliative Medicine (HPM) has undergone unprecedented growth over the last two decades. To meet the needs of seriously ill patients and families in inpatient, outpatient community setting in the future, the field of HPM must develop innovative strategies to expand the specialist workforce pipeline. With 148 programs participating in the National Residency Matching Program and 285 matched applicants in 2019, the specialty of HPM can barely replace those who are retiring or leaving the field. We call for a renewed and coordinated effort to increase the applicant pool for HPM fellowship positions, as well as greater access to specialist HPM training through expanded traditional fellowship programs and innovative specialist training pathways. Without such an expansion, our specialty will struggle to serve those patients and families who need us most.
This work describes a novel application of MR-guided online adaptive radiotherapy (MRgoART) in the management of patients whom urgent palliative care is indicated using statum-adaptive radiotherapy (STAT-ART). The implementation of STAT-ART, as performed at our institution, is presented including a discussion of the advantages and limitations compared to the standard of care for palliative radiotherapy on conventional c-arm linacs. MR-based treatment planning techniques of STAT-ART for density overrides and deformable image registration (DIR) of diagnostic CT to the treatment MR are also addressed.
The field of telehealth is rapidly growing and evolving across medical specialties and health care settings. While additional data are needed, telepalliative care (the application of telehealth technologies to palliative care) may help address important challenges inherent to our specialty, such as geography and clinician staffing; the burden of traveling to brick-and-mortar clinics for patients who are symptomatic and/or functionally limited; and the timely assessment and management of symptoms. Telepalliative care can take many forms, including, but not limited to, video visits between clinicians and patients, smartphone applications to promote caregiver well-being, and remote patient symptom-monitoring programs. This article, created by experts in telehealth and palliative care, provides a review of the current evidence for telepalliative care and potential applications and practical tips for using the technology.
Introduction: Today, new health care models are being proposed with the aim of reducing hospital beds and providing services in primary facilities and homes. These models are developed with the focus on the patients and towards their self-management and self-accomplishment of the activities. Among these, Mobile Health Technology seems to be appropriate for making a new model in palliative care and in different types of care, in general. Palliative care Application (app)can pave the way for promoting the patients' knowledge and thus improving their quality of life, which, in turn, can provide appropriate care at the end of the patients' life.
Aim: This study endeavored to develop the initial version of Mobile Application for cancer Palliative care for the purpose of improving the quality of Iranians' life.
Methods: A mixed method study was conducted in three Phases as follows: 1) comparative study of current mobile applications; 2) developing an object-oriented conceptual model for mobile apps; and 3) developing the initial version of Ghasedak (Ghasedakis the Persian word stand for "Dandelion") approved for production.
Results: Ghasedak was developed for the appropriate cancer self-care, with such functionalities as user training; including cancer definition, cancer factors, its signs and symptoms, types, prevention, cure, adherence to the constraints, strategies for reducing anxiety and overcoming fear, definition and importance of palliative care, management of physical, psychological, social as well as spiritual complications. Ghasedak also includes Clinicians appointment reminds, personal health, user guide, application setting, and patient notes.
Conclusion: Ghasedak was developed in compliance with Iranian experts' opinions. It seems it would be of help in self-care of patients with needed to palliative care.
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.
Being able to communicate effectively is an essential skill for all nurses. Communication in paediatric end of life care can be challenging for both the student and lecturer as it is a rare experience and challenging to teach. Innovative approaches to teaching communication skills such as role play, simulation and drama have been used; however there is a dearth of literature examining the use of drama in this specialist context. The aim of this study was to explore the effectiveness of a novel workshop in teaching transferable knowledge and skills in palliative, end of life and bereavement care communication to a convenience sample of first year pre-registration nursing students undertaking clinical skills training at a UK university. Qualitative and quantitative data were obtained from pre and post intervention questionnaires exploring student's perception of communication skills. Qualitative data were analysed thematically and quantitative data presented as standard descriptive statistics. The novel communication workshop facilitated students' exploration of how good and poor communication looks and feels and introduced aids to inform communication in clinical practice. Exposure to different learning approaches provided opportunities to both gain confidence in engaging in new learning activities and develop knowledge and skills through purposeful engagement.
Au Québec, le rôle des maisons de SP est central dans l'offre de soins en fin de vie. Avec l'évolution et le vieillissement de la société, des lois et du travail, qui se complexifient, les soignants et l'ensemble des intervenants se voient exposés à une demande émotionnelle croissante combinée à d'autres facteurs de stress. Pourtant, aucun programme visant à favoriser le bien-être au travail pour ce type d'intervenants ne semble disponible au Canada. S'inspirant d'écrits et d'expériences internationales, un processus novateur permettant l'élaboration et la mise en oeuvre d'un programme de bien-être pour intervenants en maison de soins palliatifs (SP) a été entrepris suivant l'influence de la recherche-action. L'article décrit cette démarche de coconstruction. Ce type d'innovation pourrait permettre l'amorce d'une transformation systémique reconnaissant l'importance de soutenir les acteurs den SP pour offrir des soins de fin de vie de qualité.
Anticipatory planning for end of life requires a common language for discussion among patients, families, and professionals. Studies show that early Palliative Care (PC) interventions based on a problem-oriented approach can improve quality of life, support decision-making, and optimize the timing of medical treatment and transition to hospice services. The aim of this quality-improvement project was to develop a pragmatic structure meeting all clinical settings and populations needs. Based on the Medical Research Council (MRC) framework, a literature review identifying approaches commonly used in PC was performed. In addition, more than 500 hospital-based interprofessional consultations were analyzed. Identified themes were structured and compared to published approaches. We evaluated the clinical usefulness of this structure with an online survey among professionals. The emerged 'SENS'-structure stands for: Symptoms patients suffer from; End-of-life decisions; Network around the patient delivering care; and Support for the carer. Evaluation among professionals has confirmed that the 'SENS'-structure covers all relevant areas for anticipatory planning in PC. 'SENS' is useful in guiding patient-centered PC conversations and pragmatic anticipatory planning, alongside the regular diagnosis-triggered approach in various settings. Following this approach, 'SENS' may facilitate systematic integration of PC in clinical practice. Depending on clearly defined outcomes, this needs to be confirmed by future randomized controlled studies.
As the population ages, the corresponding rise in people living with life-limiting illnesses will lead to a greater need for clinician experts in palliative medicine. There are not enough physicians available to care for the growing number of patients, however. We believe that nurse practitioners are well positioned to meet this demand. In this paper, we will use the concept of disruptive innovations to provide support for our belief that nurse practitioners can, and should, take a larger role in palliative medicine. First, we will describe how 2 general types of business models-solution shops and value-adding processes-can be applied to health care in general and palliative medicine specifically. Second, we will describe the concept of disruptive innovations. Finally, we will use these business models to explain how nurse practitioners are particularly well suited to disrupt the current business model of palliative medicine, thereby allowing more patients with life-limiting illness to receive the high-quality care they need.
Research into self-care practices suggests the need for conscientious and systematic support of nurses and other health care providers. The purpose of this study was to explore the impact of an innovative self-care initiative. The goals were to explore the experience of nurses and other health care providers participating in a reflective, creative nonfiction storytelling event called “Dinner and Stories” and the potential benefits and limitations of using an informal, storytelling model for self-care. A qualitative narrative design was used. Twenty-seven participants including nurses, social workers, and hospice volunteers wrote creative nonfiction stories about a lingering experience of providing care. At predefined dates, groups of up to six met for dinner in a home setting. Participants read aloud, listened deeply, and discussed their narrated stories. Four sources of data were collected: creative nonfiction stories, online forum discussions, in-depth interviews, and host facilitator field notes. Researchers identified four themes: (1) needing a self-care culture, (2) storytelling and writing as healing, (3) co-creating layers of connection, and (4) preferring face-to-face contact. Results add to knowledge about the therapeutic benefits of writing and storytelling for nurses and other health care providers including enriched meaning-making, emotional conveyance, and therapeutic connections between storytellers and listeners.
Aims and objectives: The aim of this study was to test the theoretical conceptualization of the co-creative process in home care nursing encounters over time.
Method and design: This was a multiple case study with a deductive analysis of qualitative data over time, using interviews and observations collected from three cases.
Results: The co-creative process was complex and contained main, sub- and micro-processes. Time was important and valuable, giving the patient and relatives space to adjust the process to their own pace. Some processes were worked on more intensively in accordance with the patients' and relatives' needs, and these are considered the main-process. The further developed theory of the co-creative process and its main, sub- and microprocesses can be understood as a concretization of how good nursing care can be performed within caring relationships in the context of advanced palliative home care.
Background and Objectives: Care coordination and palliative care supports are associated with reduced anxiety, fewer hospital admissions, and improved quality of life for patients and their families. Early palliative care can result in savings in the end-of-life period, but there is limited evidence that larger-scale models can improve both utilization and the cost of care. Three models that received Health Care Innovation Awards from the Centers for Medicare & Medicaid Services aimed to improve quality of care and reduce cost through the use of innovative care coordination models. This study explores the total cost of care and selected utilization outcomes at the end-of-life for these innovative models, each of which enrolled adults with multiple chronic conditions and featured care coordination with advance care planning as a component of palliative care. These included a comprehensive at-home supportive care model for persons predicted to die within a year and two models offering advance care planning in nursing facilities and during care transitions.
Research Design and Methods: We used regression models to assess model impacts on costs and utilization for high-risk Medicare beneficiaries participating in the comprehensive supportive care model (N = 3,339) and the two care transition models (N = 587 and N = 277) who died during the study period (2013-2016), relative to a set of matched comparison patients.
Results: Comparing participants in each model who died during the study period to matched comparators, two of the three models were associated with significantly lower costs in the last 90 days of life ($2,122 and $4,606 per person), and the third model showed nonsignificant differences. Two of the three models encouraged early hospice entry in the last 30 days of life. For the comprehensive at-home supportive care model, we observed aggregate savings of nearly $19 million over the study period. One care transition model showed aggregate savings of over $500,000 during the same period. Potential drivers of these cost savings include improved patient safety, timeliness of care, and caregiver support.
Discussion and Implications: Two of the three models achieved significant lower Medicare costs than a comparison group and the same two models also sustained their models beyond the Centers for Medicare & Medicaid Services award period. These findings show promise for achieving palliative care goals as part of care coordination innovation.
BACKGROUND: End of life care (EOLC) for people with dementia can present a multitude of challenges and difficult decisions for practitioners. These challenges may include assessment and management of difficulties with eating and swallowing, responding to agitation, treating pain, and managing recurrent infections. Practitioners sometimes lack both confidence in making end of life decisions and guidance. This study developed an alternative to lengthy guidelines, in the form of heuristics which were tested in clinical settings. The aim of this study was to test the usability and acceptability of a set of heuristics which could be used by practitioners providing EOLC for people with dementia in a variety of clinical and care settings.
METHODS: A three phase co-design process was adopted: 1) Synthesis of evidence and outputs from interviews and focus groups with family carers and practitioners, by a co-design group, to develop heuristics; 2) Testing of the heuristics in five clinical or care settings for six months; 3) Evaluation of the heuristics at three and six months using qualitative individual and group interviews.
RESULTS: Four heuristics were developed covering: eating and swallowing difficulties, agitation and restlessness, reviewing treatment and interventions at the end of life, and providing routine care. The five sites reported that the heuristics were simple and easy to use, comprehensive, and made implicit, tacit knowledge explicit. Four themes emerged from the qualitative evaluation: authority and permission; synthesis of best practice; providing a structure and breaking down complexity; and reassurance and instilling confidence.
CONCLUSION: Use of heuristics is a novel approach to end of life decision making in dementia which can be useful to both experienced and junior members of staff making decisions. Heuristics are a practical tool which could overcome a lack of care pathways and direct guidance in end of life care for people with dementia.
In recent years, clinical approaches to anticipatory grief and inclusivity amongst the medical team and family members have grown. In thinking about the end-of-life concerns within the pediatric care setting, practice concepts, and innovations inform how physicians and members of the interdisciplinary care team choose to approach conversations with parents and family members, as well as the particular level of involvement parents should have in decisions regarding the end of their child's life.
Ce document est l'intervention de Monsieur Jean-François Mattei, Ministre de la Santé, de la Famille et des Personnes Handicapées, lors du colloque soins palliatifs "Pratiques innovantes, besoins nouveaux en soins palliatifs et accompagnement : expériences européennes et canadiennes", le 17 décembre 2002 au Forum des Halles.
Addressing palliative care needs of people with dementia appropriately, identifying the end-of-life stage, meeting the needs of family carers as well as supporting the preferences and wishes of the person with the diagnosis can all present challenges to generalist health and social care providers. In partnership with Dementia UK and Kirkwood Hospice in West Yorkshire embarked upon a two-year pilot to introduce the first end-of-life care Admiral Nurse to their Specialist Community Palliative Care Team to identify and support people with dementia who required palliative and end-of-life care. This paper describes and discusses this innovative partnership and outcomes from year one evaluation and sets out future plans.
PURPOSE OF THE REVIEW: Care near the end of life is expensive and frequently not aligned with the expressed preferences of decedents, creating an opportunity to improve value, or increase quality while lowering cost. This review examines publications from 2017 and 2018 on interventions and policies associated with high-value end-of-life care. Innovations in video and web-based advance care planning are promising to improve preference-congruent care at low cost.
RECENT FINDINGS: The patterns of care within hospice and in particular increased investment in patient care in hospice are shown to improve value. A meta-analysis demonstrated the role of inpatient palliative care consultations in decreasing hospitalization costs, as did several studies on inpatient palliative care units. Internationally, a range of home-based palliative care programs, implemented at the population level, demonstrated cost savings and reduced intensive care near the end of life. Finally, public policies that funded medical and long-term care and address broader inequalities were demonstrated to decrease low-value care near the end of life.
SUMMARY: This review demonstrates the efficacy of a range of approaches to improve value of care at the end of life, both within the health system and across public policy sectors.